Category Archives: politics

Quickhit: Kelly Vincent elected to Upper House in South Australia!

politics

The results have been declared!

Kelly Vincent and Natasha Stott-Despoja

Image: A smiling Kelly Vincent, Dignity for Disability candidate, with a blue flower in her hair and holding a bouquet of pink roses, sits next to former leader of the Australian Democrats Natasha Stott-Despoja.

South Australia State Parliament gets first disabled politician*

Labor and Liberal won 4 seats each with the Greens and Family First each winning a seat.

The make-up of the new Legislative Council will now be Labor 7, Liberal 8, Greens 2, Family First 2, independents 2, and D4D 1.

Ms Vincent has made Australian parliamentary history by being the youngest elected Upper House MP in Australia’s histolry, the youngest female ever elected to an Australian parliament, and the first person who uses a wheelchair to be elected in the SA Parliament.

“South Australians have shouted their intentions loud and clear,” she said after the count.

“People with disabilities and those who love them will no longer be silenced. I will be a voice for those without a voice.”

Parliament House will now have a scramble to make the Chamber accessible – they’ve never bothered before.

* I strongly suspect she’s not the first disabled politician. Perhaps the first where anyone else has noticed.

Anger as a Constructive Force

activism, feminism, identity, introspective, invisibility, justice, mental health, othering, politics, resistance, social attitudes, , , , , , , ,

Note: This is kind of an old post, but I think it’s still useful.

I’m sure that many of you have heard variations on the following:

“You’re just too angry. Your anger alienates people/potential allies and might make them afraid to associate with you! They won’t want to be on your side because of your anger.”

This statement, or a variation thereof, is often wielded at feminists, people of color (particularly women of color), radical progressives, non-mainstream members of the LGBTIQA community, disabled and chronically ill folks, atheists, fat acceptance activists, and others in order to get them to capitulate to some weird, unseen social standard that requires that they not offend anyone even as they fight to be heard and taken seriously, as well as for social and political justice.

There is a difference between being angry for its own sake, and turning one’s anger into action. For whatever reason, mainstream Western culture has decided that people who have historically been put down, devalued and mistreated by those in the majority should fight for their rights, but they should “be nice” while they do so. The messages that historically devalued groups have to get across, even if said messages are quite radical, should apparently be palatable even to the people who have the most social currency in mainstream society. What’s radical about that?

Anger makes people fundamentally uncomfortable, and I think that this discomfort often discourages constructive work. When those who need to express their anger, somehow, are not allowed to do so, the anger can become toxic. Instead of a catalyst for change, it becomes a symptom of a missed opportunity.

My own anger is something that I’ve just begun to embrace after years of stuffing it down and having it reappear at other times, often to my own detriment. Certainly, I may be too angry. I may indeed alienate people with some of my words. However, do I really want those who cannot “handle” what I have to say as allies, if I have to add, for example, rainbows and unicorns and puppies to my outlook on the world in order to make my outlook more palatable? No.

Anger, if used in a constructive manner, can be a great creative force. Most of the cartoons that I draw and have drawn start or started as brief doodles about things that make me or have made me angry. When I can create something that has been inspired by my own strong feelings, I feel much better and more able to cope with things such as my illness, and the physical pain and fatigue that come with it. When I take the opposite tack–that is, when I hold my anger in and don’t do anything with it–I feel worse.

[Originally posted at HAM.BLOG on August 7, 2008.]

No, It’s Not As Easy As You Think

accessibility, autonomy, class issues, disability activism, justice, politics, social attitudes, Uncategorized

When I talk to people in the United States about disability and the need for accommodations, I am usually met with a bit of bewilderment. “You mean there’s still more work to be done on accommodations? I thought all that had been taken care of.” These are people who are used to seeing wheelchair ramps at the entrance to government buildings, used to seeing the hand switch for wheelchair users to open automatic doors, used to seeing the braille at the ATMs. Given their observations of those existing accommodations and a minimal awareness of the Americans with Disabilities Act (ADA) that mandates those accommodations, they assume that there’s been a consensus on the need to provide accommodations, a law mandating those agreed-on accommodations, and general compliance with that law.

As we well know, that is far from the truth. None of those assumptions are as true or are interpreted as broadly as people tend to assume. There is no general consensus on the need to provide accommodations for the broad range of disabilities that exist – there is general agreement that people who use wheelchairs should have access to government buildings, but there is nothing even close to general agreement on how to accommodate people with depression or even whether depression is a disability “deserving” of accommodation. The US does have a law mandating accommodations – but there are not equivalents in every country and there are significant holes in the ADA itself, often putting the burden of requesting accommodations and demonstrating a need for them on the person with a disability. Finally, the idea that agencies and businesses affirmatively comply with the ADA, obviating the need for enforcement, is just patently false.

A recent federal court decision in underlines all of these realities. In 2005, the American Council of the Blind filed a lawsuit against the Social Security Administration (SSA) “to compel SSA to provide alternative formats of communication that would enable [people with visual impairments] to have more equal access to participate in SSA programs.” (Court documents and information available through DREDEF’s site.) It took until 2009 for a court to agree and order SSA that it is required to issue notices to people with visual impairments in a format they can read – in Braille, large print, e-mail that can be read by a screen reader, computer disks, or audiotape recordings.

This lawsuit undercuts each of the assumptions above. First, there is clearly not consensus on providing accommodations, even to what would be considered a relatively “easy” impairment to accommodate – it is easy to anticipate the functional difficulties that a person with a visual impairment would encounter when presented with a written notice. A lot of these people – 250,000 of them – are getting benefits from SSA specifically because they have a visual impairment, so they’ve given SSA extensive documentation of those impairments and information on the functional limitations caused by the impairments. A much larger group – about 3 million in total – get retirement benefits from SSA. At any rate, SSA knows that these people have visual impairments and has detailed information on how those impairments affect them. And it still has not provided accommodations.

But what about the second assumption – there’s the ADA, right? It turns out that the SSA is not subject to the requirements of the ADA! The ADA applies only to state and local governments and agencies that receive federal funding – it does not apply to federal agencies such as SSA. (Raise your hand if you knew that – few people do!) The only disability rights law that applies is a precursor to the ADA, Section 504 of the Rehabilitation Act of 1973. While the requirements regarding accommodations from government agencies are largely similar, the Rehabilitation Act does provide limited rights in comparison to the ADA.

It’s also very clear that the SSA – despite being the primary provider of cash and medical benefits for people with disabilities – did not consider that it had any obligation to provide accommodations. When individual plaintiffs with visual disabilities requested that they be given notices in alternative formats, they were simply told that no other formats were available. This included notices to which people must respond within 10 days or risk losing their benefits. Even when they were initially sued in 2005, SSA argued that the Rehabilitation Act “did not even apply” to the issue of notices to people with visual impairments. Similarly, SSA did not consider itself obligated to let benefits recipients know that they had accommodation rights under the Rehabilitation Act and laying out a process for them to request and enforce those rights.

The result of the litigation is that SSA is now required to develop a procedure to 1) notify benefits recipients of their rights to accommodations for visual impairments  and 2) provide notices in alternative formats when recipients request them. Which is certainly a good thing – but one that I would simply expect from a government agency that administers disability benefits, rather than having to be ordered by a federal court after 5 years of litigation. And if accommodations that are this common sense, from a federal agency set up to deal with people with disabilities, are so hard to obtain and enforce, that demonstrates how very far we are from a society where PWDs are meaningfully accommodated.

The Community First Choice Option

accessibility, activism, class issues, policy, politics, poverty

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.

Bake Sales for Chemo

medical practice, politics, Uncategorized

I recently read a story of a woman forced to have fundraisers to cover her chemo treatment after she was excluded from purchasing insurance coverage because of a separate pre-existing conditions:

Iowan grandmother Deb Robben  shopped the insurance market, looking for a company that would cover her. Unfortunately, after a lengthy search, she was unable to find a single insurer that was willing to offer her coverage; the companies denied her coverage because they considered the benign cysts in her breasts to be a pre-existing condition.

Last December, Robben was diagnosed with colon cancer. Because she has been unable to obtain insurance, she has had to pay the costs for treatment out-of-pocket. For chemotherapy treatment alone, Robben expects to pay almost $2,000 a month. “She’s only two months into chemo and already she’s at $50,000. Oh my, what is another four months going to bring,” says Melissa Gradischnig Nelson, a friend of Robben.

In desperation, Robben’s friends and family have turned to local fundraisers to try to pay for her treatment. Over the weekend, they held a $5-a-plate pasta dinner in the hope of putting “a dent” in Robben’s massive health care bills. Local news station WHO-TV recently interviewed Robben, who told them, “It’s kind of hard when you can’t get insurance. To say, lady you’re going to die or figure out how to come up with the money. It’s not right.”

This reminded me of the bumper stickers I used to see with the slogan “It will be a great day when our schools get all the money they need and the air force has to have a bake sale to buy a bomber.” So I’ve modified it to reflect our modern times:

Graphic image of children on jungle gym with slogan about bake sales and bombers, modified to read "it will be a great day when people get all the health care they need and nobody has to hold a bake sale to get what they need to live."

Come filk with us – “Special Treatment” for PWD

accessibility, othering, politics, race, social attitudes, , , , , , ,

Paul Kelly, if you’re not familiar with him, is a bloody marvellous Australian singer-songwriter. Some consider him the “poet laureate of Australian music”. He writes everything from fun-but-pointy ballads – Every Fucking City is one of my favourite anti-hero pieces – to political protest music.

You can read a little about him here at Debbie Kruger’s:

But there are songs that have specific intent – the ones for which he is known as “political commentator.” Songs such as “From Little Things Big Things Grow,” which he wrote with Kev Carmody about Aboriginal Land Rights, “Treaty” with Yothu Yindi on Land Rights and Reconciliation and “Little Kings,” from a more recent album Words and Music, about dissatisfaction with the Government. “Those songs are the exceptions,” Kelly concedes. “’Special Treatment’ is another one like that, a specific situation and write to it.”

Check out the song:

Lyrics are here. For those who can’t access the Youtube, it’s performed in a folky acoustic-guitar sort of way.

“Special Treatment” is a great example, in my opinion, of a piece of protest music written in first-person, using the point of view of members of a marginalised group of which the singer is not a member (I think, and please correct me if I’m wrong). Kelly is deeply respectful of the history, takes his subject seriously while introducing elements of dry humour, and has collaborated extensively with artists in the group in question. The piece targets authority sharply and with bite; its impact does not on stereotypes, mocking, fetishisation, or Othering of Aboriginal and Torres Strait Islander people.

I’m acutely aware that I run the risk of ‘splaining here, and I suspect that similar grievance-politics dynamics apply elsewhere in the world: but just to dip both toes in and take that risk for a moment: a common complaint among white middle-class Australians (WMCAs) is that Aboriginal and Torres Strait Islander people in Australia get “special treatment” from government. WMCAs complain when there are funded Aboriginal health services attempting to make tiny inroads into the appalling longevity statistics, the 20-year Gap, the rates of trachoma and hookworm and pneumonia and STDs and nutritional deficiencies. WMCAs complain when there are tutoring and bridging programs assisting Aboriginal people from remote areas to go to university, attempting to address the massive gulf between educational opportunities, entrenched discrimination, and difficulties of transitioning from remote areas to urban universities with a completely different cultural milieu.

WMCAs complain when Aboriginal people who are out of work are offered barely enough support to not starve their families; when there are programs to assist the Aboriginal prisoners who survive prison to transition back to the community; when mental health support programs are offered in an effort to reduce the 8x suicide rate among young Aboriginal people; when STD and contraception services are funded for young Aboriginal women who are raped at extraordinary rates; when funding for domestic violence and violence reduction programs are offered to women who live in fear. All this and more is dismissed as unfair “special treatment”.

In response to a post I wrote responding to a post by CarrieP at Big Fat Blog – in which Carrie wished that fat people were offered the same level of “special treatment” and respect that people with disabilities are – megpie wrote a touching filk to the tune of Kelly’s “Special Treatment”. (OK, verse three is the same – and applies pretty precisely to the situation of forcibly-institutionalised PWD.) Check it out (while listening to the Kelly original, if you can) – and add your own verses in comments.

I can’t enter my child’s classroom
Although the door’s right there
I’m stuck outside my child’s classroom
Blocked by a single stair

I get special treatment
Special treatment
Very special treatment

I’d like to work an eight hour day
In an office on main street
But they won’t offer me the same pay
Or add a ramp my chair needs

Say it’s “special treatment”
Special treatment
Very special treatment

Mother and father loved each other well
But together they could not stay
They were split up against their will
Until their dying day

They got special treatment
Special treatment
Very special treatment

Mama gave birth to a healthy child
A child she called her own
Strangers came and took away that child
To a stranger’s home

She got special treatment
Special treatment
Very special treatment

I’m not allowed to cry out loud
I’m not allowed to scream
I’m not allowed to show my rage
I’m not allowed to dream

After all, I get special treatment
Special treatment
Very special treatment

A program on disability rights in Australia

history, politics, television

A couple of days ago, Australian investigative journalism television program Four Corners aired a story called Breaking Point. It covers some of recent Australian disability rights history, personal stories from many individuals and families, discussion of a proposed national disability support scheme, differences between the UK and Australian systems, all sorts of things. It’s rather long at the better part of an hour, but you may find it worth just dipping in, if only a little, particularly if you’re not familiar with disability rights in Australia.

From the program website:

The system of assistance for people with a disability in Australia is broken. Carers know it, charitable organisations know it and so do the governments. Now the federal government says something must be done. It’s holding an Inquiry, with the intention of creating a new and fairer system. It’s even considering a national disability insurance scheme. But will the system be reformed in time to save the families now at breaking point?

Here’s a transcript of the program.

You can access the program itself here as well as extended interviews, further reading and news highlights here.

Do check it out!

Accessibility & Sustainable Transportation

accessibility, autonomy, politics, social attitudes

Last week I attended a meeting at my university campus regarding sustainable transportation options for the next five to ten years. We’re at an interesting point in time here, as both the transit routes and the university are putting in long-term planning, so we may have a chance to push for real, useful, interesting change that can have long-term impact on both the university community and the greater community.

I would say “Ask me what wasn’t covered at all!” but I’m sure you can all guess – accessibility was never mentioned, even though the initial study into the needs of students, faculty and staff on campus had raised issues of accessibility.

But! Credit where credit is due. I brought this up at the meeting, and then again (as in, ten minutes later) with head of my particular branch of student government, and this afternoon attended a meeting including myself, the president of my particular branch of the student union, and student accessibility services to talk about concerns regarding accessible transport and sustainable transport.

Basically, the topics of conversation were around the fact that we’re a growing campus, we have greater needs regarding getting people to and from campus every day, but we want those needs to be Green in focus. The initial meeting I attended last week focused on things like faculty bus passes, incentives to car pool, and what encourages people to walk or bike to campus.

What we talked about today were more focused ideas that were inclusive of people with physical and sensory disabilities. I wanted to talk about this here, because I have no illusions: Even with student accessibility services there, we were still only talking from a limited perspective. I focus a lot on mobility needs, and more specifically on the needs of people using wheelchairs, for reasons I think are obvious, and the gentleman from student accessibility services then focused a lot on issues around students with low-vision, or who are blind.

I figure I’ll use our meeting for a greater discussion here. I want to both bring attention to others about sustainable transportation conversations and how to include concerns about accessibility and people with disabilities in them, but also I want to have more feedback and input. There are new students every year, new faculty who may have different issues regarding transportation and accessibility. The more we talk, the more we collectively can ask for things that will aid as many of us as possible.

Things that were brought up:

– Sidewalks. We talked about how horrible they are around the university, although this is pretty universal in our city. SAS brought up the needs of students who are low-vision or blind about sidewalks, including the need for high-contrast paint jobs on the curbs and around obstructions, and to have some sort of guide on the actual sidewalk for canes.

– Buses. More seating for bus stops around campus. Pushing to get more accessible routes to come here. Stop announcements (municipally they’re on the agenda for next year). Giving out cards to people so they can just show their card (usually something bright) so the bus driver will just lower the low-floor buses without you needing to ask. A recording to indicate when the next bus is coming.

I happen to know from looking at the current five-year plan regarding the bus service here that it will cost $1500 per stop to get a stop up to what they want for accessibility needs, and that a route must be entirely made up of those stops before it is allowed to carry people who use wheelchairs. This is a long-term project, sadly.

– Parking. I confirmed that here there is no additional charge for parking passes if you have a disability, you get guaranteed parking, and if there is a greater need for parking in front of a building, Facilities Management will actually designate more spots accessible. I don’t know how that plays out in reality, though. (I note there’s only one accessible parking space in front of the Library, for example.)

What are your thoughts regarding this?

Newsflash: Poverty is Bad for Your Health

class issues, disability activism, intersectionality, policy, politics, poverty, race

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

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

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

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

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

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

What is the Real Goal of Fraud Investigations?

accessibility, blaming, class issues, intersectionality, politics, shaming, social attitudes

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

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

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

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

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

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

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

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