Category Archives: poverty

Recommended Reading for June 15, 2010

dhobikikutti (DW): This is also needed: A Space In Which To Be Angry

And what I have realised is that there is a sixth component to [personal profile] zvi‘s rules, and that is that complaining about and calling out what you do not like does help, slowly, painfully, get rid of it.

Every time I see friends who make locked posts about fic that Others them, that writes appropriatively and ignorantly and dismissively and condescendingly and fetishistically about their identities, I think — there needs to be a space where this can be said.

damned_colonial (DW): Hurt/comfort and the real world [warning: derailing in comments]

Writing a short ficlet in which someone who has been abused/injured/disabled/etc is “comforted” and feels better seldom bears much relation to the reality of abuse/injury/disability/etc. Which, OK, we write a lot of unrealistic things. The problem with this one is that the idea of hurts being easily cured/comforted is one that also exists in the real world and harms real people. Almost anyone with a real-world, serious “hurt” has had people dismiss and belittle their experience on the assumption that they “should be over it by now” or that “if you just did X” the problem would go away. People are often treated badly or denied care on these grounds.

Pauline W. Chen, M.D. (New York Times): Why Patients Aren’t Getting the Shingles Vaccine

“Shingles vaccination has become a disparity issue,” Dr. Hurley added. “It’s great that this vaccine was developed and could potentially prevent a very severe disease. But we have to have a reimbursement process that coincides with these interventions. Just making these vaccines doesn’t mean that they will have a public health impact.”

Trine Tsouderos (Chicago Tribune/L.A. Times): The push and pull over a chronic fatigue syndrome study

Nine months later, the joyous mood has soured. Five research teams trying to confirm the finding have reported in journals or at conferences that they could not find the retrovirus, known as XMRV, in patients diagnosed with chronic fatigue syndrome, casting grave doubts on the connection.

Kjerstin Johnson at Bitch Magazine’s Sm{art} blog: Riva Lehrer’s body of art

To Lehrer, who has spina bifida, “Disability and art are natural partners. In order to have a good life with a disability, you have to learn to re-invent your world almost hour by hour. You discover ways to re-imagine everything, and how not to take the average answers to everyday questions…”

This Is Not Education: Abuse of Autistic Students in Pennsylvania

Content warning: This post contains discussions about abuse of people with disabilities, including physical assault and the use of restraints.

Last week, a major civil rights lawsuit was settled in Pennsylvania when seven families agreed to accept five million United States Dollars to resolve a case they filed against a teacher and her superiors, arguing that she abused the students in her care and her superiors did not take adequate steps to address it. It is the largest case of its kind in history in Pennsylvania, and one of the largest in US history. The teacher has already served six weeks for reckless endangerment; the question here isn’t whether she abused her students or not, but why the district failed to do anything about it.

These students were in elementary school. They were restrained to chairs using duct tape and bungee cords. The teacher stomped on the insoles of their feet, slapped them, pinched them, and pulled their hair. These nonverbal students apparently weren’t provided with communication tools that they could have used to report to their parents, which meant that the teacher was free to lie about the source of the injuries these children experienced while in her classroom. Horrified aides in the classroom reported it, and the teacher was simply reassigned.

The teacher’s defense was that she didn’t have training or support. This may well have been true. However, if that was the case, she should have recused herself from that classroom. Aides confronted her about her classroom behaviour and she said she ‘didn’t know how to stop.’ I’d say that asking to be taken out of that classroom would have been a pretty fucking good way to stop. If the defense to that is ‘well, it would have ended her teaching career,’ then may I suggest that a person who physically abuses children is not fit to be a teacher? That a person who feels that stomping on the insoles of a child’s feet is an appropriate method of ‘discipline’ is clearly not someone who should be in charge of a classroom?

‘We weren’t sure how a jury would view these facts, especially since children were involved,’ an attorney for the defense said, which is a polite way of saying ‘we are well aware that if this case had gone to trial we probably would have paid more than five million.’ The funds are being put in trust for the children, who, among other things, are in need of therapy.

There have been ‘hundreds of cases of alleged abuse and death related to the use of these methods on schoolchildren during the past two decades.’ The House of Representatives actually recently passed a bill addressing this issue, responding to a report from the General Accounting Office documenting abuse of school children across the United States.

The restraint of children with disabilities in school is, unfortunately, not at all notable. It’s a widespread and common practice and I see stories about it in the news practically every week. I’m sure a perusal through the recommended reading archives here would turn up several examples. This doesn’t make it any less vile or wildly inappropriate. I am heartened that legislation has been passed to address the issue, but outlawing abuse isn’t enough, and it’s clear that better training, accountability, and transparency are needed. The reports of those aides shouldn’t have been ignored. That district should not have reassigned the teacher to another classroom.

What is remarkable, and important to note, is that it takes a lot of money to take a case like this to court. Which means that settlements of this kind are only really available to families with at least some money. Even with lawyers willing to volunteer time, taking a case through the courts requires time, energy, the ability to pull supporting materials together, and patience. These things are not options for all families. Especially for parents with disabilities, the barriers to getting to court can be an obstacle so significant that even if they want to fight for their children, they might find it impossible to take a case to court.

Access to justice should not be dictated by social status and economic class, but it often is.

We shouldn’t have to pass laws saying it’s not ok to duct tape children to chairs, but we do.

Where About Us But Without Us Leads

On 1 June 2010, E. Fuller Torrey MD wrote an op-ed column for the New York Times, “Make Kendra’s Law Permanent.” Dr Torrey is the founder of the Treatment Advocacy Center (TAC), a nonprofit group whose sole purpose is to lobby states for the passage of so-called assisted outpatient treatment (AOT) laws like Kendra’s Law in New York and Laura’s Law in California. The New York law is named after Kendra Webdale, who was killed by Andrew Goldstein in 1999.

Dr Torrey and TAC will tell you Mr Goldstein had untreated schizophrenia. They’ll tell you people like him are dangerous, they’ll tell you people like Mr Goldstein are often so sick they don’t understand they’re ill and need treatment, and they’ll tell you they know best. They won’t tell you that Mr Goldstein had been seeking treatment desperately and been turned away repeatedly.[1. Source: Time Magazine, “Will the Real Andrew Goldstein Take the Stand?”] Continue reading Where About Us But Without Us Leads

Recommended Reading for Thursday May 20 2010

An image of a beach with blue sky, dotted with clouds. A figure sits in the sand by the waves. In the foreground, a wheelchair sits on the sand.
An image of a beach with blue sky, dotted with clouds. A figure sits in the sand by the waves. In the foreground, a wheelchair sits on the sand.

“….” by mataikan, seen at binary canvas.

Ghana News Agency – Mental Health System on the verge of collapse

Dr Akwasi Osei, Chief Psychiatrist of the Ghana Health Service, on Monday said the mental health system would soon collapse if the Mental Health Bill was not passed to correct the abuses and injustices in mental care. He said it was unfortunate that the Bill, drafted in 2004 and completed 2006, was still lingering at the Ministry of Health. Speaking at a workshop on the State of the Mental Health Bill and the United Nations Convention on the Rights of Persons with Disabilities, (UNCRP) for media practitioners, in Accra, he stressed that there was the need for the law to protect the rights and interest of patients and to overhaul the entire mental health system.

Guernica – Jonathan M. Metzl: In Medical Records, a Story of the Racialization of Schizophrenia

Ionia held these men using little-known loopholes in deinstitutionalization amendments that stipulated that the hospital would continue to receive or contain patients deemed too violent for state correctional institutions, or who posed “dangerousness to the community” even after most other patients were set free. The word negro appeared on the upper right corner of the face page in eight out of every ten of these charts. And schizophrenia, paranoid type was overwhelmingly the most common diagnosis applied to these men, these institutionalized black bodies that deinstitutionalization left behind.

the personal hurricanes of kirsty mitchell – quote from siri hustvedt, the shaking woman

the DSM does not tell stories. It contains no cases of actual patients or even fictional ones. Etiology, the study of the cause of illness, isn’t part of the volume. Its mission is to be purely descriptive, to collect symptoms under headings that will help a physician diagnose patients. there is a companion DM-IV casebook, but notably, these narratives about real doctors and patients are gathered in their own volume, seperate from the diagnostic tome.The fact is that all patients have stories, and those stories are necessarily part of the meaning of their illnesses. This may be even more true for psychiatric patients, whose stories are often so enmeshed with the sickness that one can’t be untangled without the other.

Toronto Sun – Family denied residency because of disability

A French family denied permanent residence in Canada because one of the kids has cerebral palsy may have to leave the country following a federal court decision Tuesday. David Barlagne has been working in Montreal since July, 2005. He applied for permanent residence status for his family but was turned down because of the extra costs of putting his daughter Rachel, who has cerebral palsy, through elementary and secondary school. Under Canadian law, immigration officials have no choice but to deny applicants whose health condition could cause excessive demand on social services. Barlagne appealed but the federal court upheld the original decision.

Caltics – Don’t Fall For Arnold’s Wedge [California governor Arnold Schwarzenegger recently issued a proposed state budged with drastic cuts to essential programs for low income Californians and Californians with disabilities.]

Now it must be said that it’s not just the poor who will suffer under this budget. But the budget cuts are quite obviously calculated to hit those Californians without a voice, who are seen as marginal, whose funding can be cut with the least public outcry. The elderly who will lose some or all of their IHSS benefits and the children who will lose health care services are not necessarily “poor”; those cuts will hit the middle-class as well. We can’t fall for Arnold’s wedge. Arnold is shifting tactics because he’s scared of us – scared of the public reaction against three years of austerity. Now is the time to ramp up the attack on that austerity, to move beyond tired old Reaganite claims that there’s some difference between the needs of the middle-class and the needs of the poor. Many middle-class families have benefited from the very safety net programs Arnold now proposes to cut or eliminate, and many more middle-class families benefit – at their jobs and businesses – from less fortunate families having at least some state assistance.

Why I Am Not a Libertarian

Here in the U.S., there’s been a lot of buzz about Rand Paul, son of Ron Paul, winning the primary for Republican senator in Kentucky. Paul is a darling of the Tea Party and largely espouses libertarian values of decreased taxes and decreased government regulation and intervention.

There are some things about libertarianism that I like and agree with. I’m against state interference in romantic and/or sexual relationships between consenting individuals with full capacity. I’m in favor of strong civil liberties and freedom from search or surveillance by the state.

But I do not trust the free market to take care of civil rights issues, primarily because I’ve seen the free market fail to take care of civil rights issues for hundreds and really thousands of years. And I believe that getting the government out of the business of defining and enforcing civil rights would have disastrous results for all but the most privileged among us. And Rand Paul’s espoused views bear that out. Here’s what he’s got to say about LGBTAI rights and women’s health:

Not only is Paul perfectly fine with government prohibiting marriage between gays and lesbians, it bears mentioning that Paul’s anger towards the government for “betraying the medical privacy of ordinary citizens” doesn’t extend to women, whom he believes should be forced to carry unwanted pregnancies to term if state legislators deem it so. He also wants to offer legislation “restricting federal courts from hearing cases like Roe v. Wade.”

This isn’t even a consistent position – Paul is in favor of government intervention in personal relationships, as long as it’s “only” LGBTAI relationships. He’s also in favor of government intervention in personal medical decisions, as long as it’s “only” affecting the decisions of women considering whether to terminate a pregnancy. What he has to say about protections for people with disabilities is even more troubling:

You know a lot of things on employment ought to be done locally. You know, people finding out right or wrong locally. You know, some of the things, for example we can come up with common sense solutions — like for example if you have a three story building and you have someone apply for a job, you get them a job on the first floor if they’re in a wheelchair as supposed to making the person who owns the business put an elevator in, you know what I mean? So things like that aren’t fair to the business owner.

Yes! Let’s let the free market take care of rights for people with disabilities! Because it’s for damn sure that even with the existing governmental protections for civil rights, companies are taking an unbiased and totally not ableist at all approach to employing PWDs and even accommodating them as customers! So eliminating those marginally adequate and woefully underenforced protections would surely have the effect of enhancing overall liberty and freedom! That is, if you are looking only at the liberty and freedom of the already privileged.

There has been a lot of discussion on this site of how entrenched institutional ableism results in discrimination against PWDs, makes them more likely to live in poverty, lack employment, and have disproportionately negative health outcomes. That’s the status quo that would be preserved if government intervention and regulation of the rights of PWDs were to end. But there are definitely people who are benefiting from the status quo – white, cis, hetero, TAB men, predominantly. And we should be very clear that limiting government intervention would primarily preserve the status quo that benefits them.

Which is why you should not be surprised by two facts: 1) Rand Paul is a white cis hetero TAB man, and 2) I strongly disagree with these political ideas. While there are some areas in which I support limiting government intervention, my overall goal is to maximize rights of historically disadvantaged and relatively unprivileged populations, whether it takes more or less government to reach that end.

BADD: Why I Write

(This was originally posted as a BADD contribution at my tumblr.)

I spend a lot of time blogging about and against ableism, about being a person with a mental illness, about the way policies and cultural attitudes and assumptions act to disadvantage people with disabilities. But for some reason, I was having a lot of trouble coming up with a topic for[BADD] . I got some good suggestions – issues of ableist language (and I’ve written in the past about the words ‘retarded’ and ‘hysterical’ and their ableist roots and effects), issues about the enormous intersection between poverty and disability (poverty leads to bad health outcomes and disability often leads to poverty, making a self-reinforcing cycle), and disability tropes in pop culture (I don’t watch family guy but have talked about 90210!).

I thought of some other topics I could address – why I see today’s immigration protests and related activism as a disability-related issues and the importance of intersectionality issues in meaningful social justice work, or even an info piece on how PWDs should take steps to prepare for emergencies such as natural disasters. but I didn’t feel excited about any of those.

So I’m going to go back to the beginning, and talk a little about why I identify as a person with a disability, why I talk about disability issues, why I’m a contributor to a blog about feminist and disabilities, why I spend so much time and emotional energy on these topics. (Which are, frankly, often personally distressing, what with all the info about how I’m going to die poor and alone.)

I write because I want things to change. I’m not always sure the writing helps me individually – it is hard to focus on these issues, to perpetually remind myself of the limitations caused by my disabilities, of the societal attitudes that assume that I am lazy and worthless and dangerous to be around, of the innumerable policies and laws that reinforce and ensure the unequal status of PWDs. And while I see the value of creating a space where other PWDs can discuss their personal circumstances and struggle and receive support instead of judgment and blame, the internet is a big enough place that I think that role is being filled, well, by lots of blogs and LiveJournal/Dreamwidth communities.

I write because I want people – both PWDs and TABs – to recognize the larger cultural and political forces that create and maintain societies that use disability as a punchline, as an insult, as a reason to keep people unemployed, poor, disempowered, and sometimes leading directly to their deaths. I want PWDs in the US, Canada, UK, Australia, and other “first world” countries to understand that lobbying their governments to abandon use of land mines can directly affect the prevalence of disabilities in poorer countries like Cambodia (thanks to s.e. smith for that great post!). I want people to think about how recovery efforts in disaster-affected areas like Haiti need to include specific focus and attention on the unique and disproportionate needs of PWDs.

But for me, it’s not enough to just help people understand. I desperately want them to act. To get involved in the political process to advocate for the rights and needs of PWDs. To get involved in social justice issues as a whole, because issues affecting immigrants are going to fall heavy on immigrants with disabilities. To tease out how a national policy can and will affect PWDs in other, poorer, countries. To vote, to talk to their elected representatives, to encourage others to act.

I believe that change is possible. And I blog to facilitate, encourage, and promote that change.

Why SF’s Proposed Sit/Lie Laws Are a Terrible Idea

In San Francisco currently, there is something of a debate brewing about Mayor Newsom’s proposed sit/lie laws, which would make it illegal for anyone to sit or lie on any public curb or street in San Francisco (with a couple of exceptions).

The intersections with disability here are rather clear. For one thing, there are some intersections between homelessness and disability, because some homeless people are, for example, mentally ill or have disabling physical problems. Do either of these things make them unworthy of compassion, or not human? Of course not, but from the way this proposed ordinance is designed, it is, on a very basic level, criminalizing homelessness even more than it is already criminalized (not to mention socially stigmatized), while taking extra “common sense” steps to avoid citing non-homeless people for an offense. Observe the following response to concerns that SF police would begin to crack down on non-homeless people were the laws to go into effect:

During a heated, five-hour Board of Supervisors public safety committee hearing on the issue Monday, Adachi showed photographs of behavior that would be illegal under Newsom’s proposed law: a well-heeled tourist sitting on her luggage as she waits for a cab, a little boy sitting on a sidewalk clutching his skateboard, and tourists sitting on a curb and gazing up at the sights.

Assistant Police Chief Kevin Cashman said all of those people would be warned first to move and that none of them would probably receive a citation.

“Obviously common sense is going to be part of the training with enforcement of this statute,” he said at the hearing.

Ah, yes, “common sense.” Common sense, apparently, still makes the further stigmatization of homeless people de rigeur. Because apparently, they don’t deserve to sit down in public, unlike “well-heeled” tourists and neighborhood residents. I wonder what the response to a person with disabilities — tourist or not — needing to sit down on a public street might be? Someone waiting for an ambulance? While that is approaching a bit of a slippery slope argument (which I generally like to avoid), it is worth considering, simply because “common sense” will mean different things to different people — those whose job it is to enforce the statute included.

Also interesting is the framing of this ordinance in terms of concern for children. From one of the SF Gate articles:

Newsom, who bought a home in the Haight recently, was convinced to support an ordinance after walking along Haight Street with his infant daughter and seeing someone smoking crack and blocking the entrance of a business.

Certainly, children need to be protected from dangerous situations or potentially dangerous situations, but is an ordinance that criminalizes the poor and homeless — not all of whom are recreational drug users or addicts — really the way to do it?

Additionally, nowhere have I seen any plan to increase the number of homeless shelters or services for homeless people attached to this ordinance. The implicit message behind these proposed sit/lie laws seems clear: It’s too bad you’re homeless, but don’t you dare be homeless on our streets, because it might make our city look bad. Oh, and you certainly shouldn’t expect the city to help you not be homeless — even after it cites you for breaking the sit/lie law.

(Cross-posted to ham blog)

Happy Cesar Chavez Day!

Here in California, today is an official State holiday to celebrate the life and work of Cesar Chavez. Chavez worked to promote and enforce the civil rights of farm workers and, with Dolores Huerta, was cofounder of the United Farm Workers of America, or UFW – still one of the United States’ two major union umbrellas. While his work is usually viewed through the lens of organizing for Latinos, there is a significant disability component to his work.

Migrant farm workers are affected by a number of intersecting a complex factors which negatively affect their health and put them at risk of becoming permanently disabled through their work. They are likely to be exposed to harmful chemicals or dangerous work situations and because they often live on the farm under the control of the farm owner, they have little access to health care. This is all complicated by the immigration status – or lack of – of the workers. Here’s a brief overview of the occupational hazards, from the National Center for Farmworker Health:

The agriculture industry is one of the most dangerous occupations in the United States. While farmworkers face workplace hazards similar to those found in other industrial settings, such as working with heavy machinery and hard physical labor, they also face unique occupational hazards including pesticide exposure, skin disorders, infectious diseases, lung problems, hearing and vision disorders, and strained muscles and bones. Lack of access to quality medical care makes these risks even greater for the three million migrant and seasonal farmworkers who work in the fields every year.

In 2007, for every 100,000 agricultural workers in the U.S. there were 25.7 occupational deaths in agriculture. This compares to an average rate of 3.7 deaths for every 100,000 workers in all other industries during this same year. The Centers for Disease Control and Prevention label agriculture the most dangerous industry for young workers in the United States, accounting for 42 percent of all work-related fatalities of young workers between 1992 and 2000. Fifty percent of these victims were younger than 15 years old.

During their daily work, farmworkers are often exposed to pesticides. A 2002 study examined take-home organophosphorus pesticide exposure among agricultural workers and found pesticides in dust samples from 85% of farmworkers’ homes and 87% of farmworkers had pesticides in dust samples in their vehicles. In addition, 88% of farmworker children had organophosphate metabolites in their urine.

Infectious diseases among the farmworker population are caused by poor sanitation and crowded conditions at work and housing sites, including inadequate washing and drinking water. Farmworkers are six times more likely to develop tuberculosis when compared with other workers, and rates of positive TB results between 17% and 50% have been reported throughout the United States.

Because farm labor consists of constant bending, twisting, carrying heavy items, and repetitive motions during long work hours, farmworkers often experience musculoskeletal injuries. Furthermore, workers are often paid piece-rate, which provides an incentive to work at high speed and to skip recommended breaks. From 1999 to 2004, almost 20 percent of farmworkers reported musculoskeletal injuries.

Another complicating factor is the prevalence of child labor on these farms. It is obviously difficult to quantify this phenomenon, but worldwide, approximately 132 million kids between the ages of 5 and 14 work in agriculture. In the United States, somewhere between 300,000 and 800,000 children do agricultural work, sometimes working 12 or even 14 hour days. Environmental pollutants like pesticides have greater effects on children and their growing bodies are often at greater risk of harm from musculoskeletal and other injuries.

The punishing nature of this work is well known and acknowledged by government agencies. The Social Security Administration, which provides cash benefits and medical coverage to individuals it determines are “permanently disabled,” has a special category for “the worn-out worker.” This is a provision specifically for someone with less than a 6th grade education who, after 35+ years of arduous manual labor, can no longer return to that previous employment. The most common example of someone who fits this category is a migrant farm worker – someone who worked in orange orchards, climbing ladders, carrying heavy boxes of fruit, whose body has simply broken down and can no longer sustain that arduous labor.

There are three million workers currently in the fields, including a significant number of children, for whom this is the expected outcome – if they manage to sustain their labor for thirty five years. Cesar Chavez fought for those people and fought to protect them from outcomes and conditions that were, in his time, even worse and more damaging than what I’ve described above. We now must continue his fight.

Si Se Puede!

Mental Health Care in Post-Quake Haiti

An excerpt from a New York Times article – click through for the whole piece.

Inside this city’s earthquake-cracked psychiatric hospital, a schizophrenic man lay naked on a concrete floor, caked in dust. Other patients, padlocked in tiny concrete cells, clutched the bars and howled for attention. Feces clotted the gutter outside a ward where urine pooled under metal cots without mattresses.

Walking through the dilapidated public hospital, Dr. Franklin Normil, the acting director, who has worked there for five months without pay, shook his head in despair.

“I want you to bear witness,” he told a reporter. “Clearly, mental health has never been a priority in this country. We have the desire and the ability, but they do not give us the means to be professional and humane.”

As disasters often do in poor countries, Haiti’s earthquake has exposed the extreme inadequacies of its mental health services just at the moment when they are most needed. Appalled by the Mars and Kline Psychiatric Center, the country’s only hospital for acute mental illness, foreign psychiatrists here have vowed to help the Haitian government create a mental health care system that is more than just an underfinanced institution in the capital city.

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.