Monthly Archives: March 2010

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.

Recommended Reading for March 25, 2010

Some reasons to provide transcripts

Transcripts are often framed as an accessibility issue for people who are Deaf or hard of hearing. This is certainly the case; if you post a video or audio clip without a transcript or captions, people who are Deaf or hard of hearing will not be able to access it.

However, there are some other reasons to provide transcripts—reasons which I think should be pretty compelling even to people who don’t care about making their content accessible to Deaf and hard of hearing folks—if you want as many people as possible to be able to engage with your website and your content, you should be providing transcripts and image descriptions.

You don’t need captions and dismissal of needs

That aforementioned disadvantage of being unable to process sounds and dialogue kind of impairs my ability to watch a movie, especially the first time, under “normal” conditions, where the movie is put on and the audience sits down to watch without doing much else. However, in this day and age where we have DVDs with captions “for the hearing impaired,” I can make it so that there are captions to accompany the dialogue. The words on their own are just garbled sounds impossible to process in time because new sounds have to come in, but with words added, there are the characters to explain which words the sounds are supposed to be. They aid my understanding of which sounds go with which words.

True Story

My little boy was written a prescription for Occupational Therapy by his pediatrician for dyspraxia and hypotonia.

My insurance approved the prescription.

After 2 years, they revoked their approval because he has autism and backcharged me $24,000.

Guilt…

I know that this isn’t a helpful reaction, or one that reflects reality well, but my brain doesn’t seem to get the message. I wish it would, but that’ the beauty of mental illness, isn’t it? To have separate truths, coexisting.

That damned social conditioning, always reminding me that I am not the deserving poor, that there are people worse off than me and that I should just suck it up and do better. Other people “win” the battle against mental illness, why can’t I?

And a reminder: Next Carnival of Feminists is coming up on March 31 at Beauty Schooled Project. Deadline for submissions is March 29.

Note: There won’t be a Recommended Reading for Friday, March 26th as Don & I are visiting the Cancer Doctor to find out what’s going on with Radiation.

Recommended Reading for March 24, 2010

Vaginismus and biofeedback on Dr. Oz

Unlike a few months ago when Dr. Oz did vulvodynia, this time he did not have a representative from a vaginsimus awareness organization on the show. Perhaps this is because there is no such nationally recognized vaginismus organization (that I’m aware of,) as there is with the National Vulvodynia Association. There are patient-led organizations, treatment clinics, support groups, and doctors prepared to address vaginismus, yes. But for some reason Dr. Oz did not have anyone from one of these groups on the show to talk about it. Instead, he called a random audience member, Ronnie, onto the stage.

I think it is no coincidence that on this episode, without the direction of someone experienced in dealing with vaginismus, it was treated more flippantly than vulvodynia was a few months ago. Vaginismus was compared to panic attacks, localized to the pelvic floor.

One Hell Of A Ride

I’ve been talking to several people about cures and quality of life, and I find I’m struggling to organise my thoughts on my own quality of life. I’ve blogged extensively about this, both the negatives and some of the positives. But some of my interlocutors seem to want one-line generalisations like “given the choice, one would naturally chose not to be blind”.

But I can’t do that. I can’t put the whole of my disabled experiences in tidy one-line summaries like that.

T-shirt Slogan Fail

The stigma surrounding mental trauma and non-neurotypical brain conditions is a huge barrier to full emotional health. When people are unable to talk about their condition for fear of being ostracized, or losing a job, or being kicked out of housing, or losing custody of a child, or coerced into treatment regimens they don’t consent to “for their own good,” the silence they are forced into only exacerbates their suffering. It cuts them off from potential sources of support. [And let me be very clear that the fears listed above are not irrational and paranoid: they are very real occurrences; I’ve experienced a couple myself.]

I’m all for people taking steps to eradicate the stigma of having a mental illness or non-neurotypical condition, and I think it’s great to have allies in this struggle. So for the most part, the goal of the website is a decent one, and I was happy to see that the site also contains good information for people just starting out in trying to understand what it means to have a mental health condition that can impair one’s day to day quality of life.

But.

In the news:

US: Vermont cop tases and tases a mentally ill homeless 59 year old woman

A cop in Barre, Vermont repeatedly tased Ann Osborn, a 59-year-old mentally ill homeless woman who was standing in a parking lot with her arms folded.

Fiji: Hospital faces major wheelchair shortage

Health Ministry spokesman Iliesa Tora said the lack of wheelchairs was a problem especially at the Colonial War Memorial Hospital’s Emergency Unit. CWMH’s Emergency Unit, known to cater for the very critical and serious cases, now faces a problem to provide wheelchairs to assist those who can not walk or find difficulty to walk in to see a doctor. It was confirmed that wheelchairs were shared among patients and in some cases caused delays for those who needed immediate attention or wanted to go to the toilet.

Happy Ada Lovelace Day!

Ada Lovelace Day is a celebration of women inventors & women in the sciences. It is also a poorly-disguised excuse for me to history geek at everyone around me, since, of course, we can celebrate awesome scientists both past & present.

I know that this list is fairly quick & dirty – the history of technology & medicine is not really my strong point, I must admit, and I’m still hoping to get a broader list next year and in future years. I also, of course, want to live in a world where one does not feel obligated to spend a “special day!!!!” celebrating the achievements of women because those achievements are no longer underplayed, undervalued, or just ignored. But, since I live in this world, with my own limitations and my own need to learn more, this is the list I have.

A (short) (biased) List of Women Who Invented Stuff Relevant to the Interests of Some People With Disabilities:

Dorothy Crowfoot Hodgkin won the 1964 Nobel Prize in Chemistry.

A British biochemist and crystallographer and the 1964 Nobel Prize winner in Chemistry for her determination by X-Ray techniques of the structures of biologically important molecules. Dorothy Crowfoot Hodgkin used X-Rays to find the structural layouts of atoms and the overall molecular shape of over 100 molecules including: penicillin, vitamin B-12, vitamin D, and insulin.

Helen Free invented the home diabetes test

Three years after beginning work at Miles, she married Albert Free (1947). Often working together, they became two of the world’s leading experts on urinalysis, an essential clinical procedure with countless applications. Free first developed dry reagents for use in laboratory urinalysis that are now, in tablet form, standard around the world. She went on to develop more consumer-oriented devices. The most important of these was a “dip-and-read” test that for the first time allowed diabetics to monitor their blood glucose level instantly and at home.


Gertrude Elion invented the leukemia-fighting drug 6-mercaptopurine and drugs that facilitated kidney transplants.

Gertrude Elion patented the leukemia-fighting drug 6-mercaptopurine in 1954 and has made a number of significant contributions to the medical field. Dr. Gertrude Elion’s research led to the development of Imuran, a drug that aids the body in accepting transplanted organs, and Zovirax, a drug used to fight herpes.

Dr. Marie Curie is known to the world as the scientist who discovered radioactive metals.

Together with her husband, Pierre, she discovered two new elements (radium and polonium, two radioactive elements that they extracted chemically from pitchblende ore) and studied the x-rays they emitted. She found that the harmful properties of x-rays were able to kill tumors.

Rachel Fuller Brown and Elizabeth Lee Hazen invented the worlds first useful antifungal antibiotic – nystatin.

As researchers for the New York Department of Health, Elizabeth Lee Hazen and Rachel Fuller Brown combined their efforts to develop the anti-fungal antibiotic drug nystatin. The drug, patented in 1957 was used to cure many disfiguring, disabling fungal infections as well as to balance the effect of many antibacterial drugs

Bessie Blount patented a device that allowed amputees to feed themselves

Bessie Blount, was a physical therapist who worked with soldiers injured in W.W.II. Bessie Blount’s war service inspired her to patent a device, in 1951, that allowed amputees to feed themselves. The electrical device allowed a tube to deliver one mouthful of food at a time to a patient in a wheelchair or in a bed whenever he or she bit down on the tube. She later invented a portable receptacle support that was a simpler and smaller version of the same, designed to be worn around a patient’s neck.


Patricia Bath invented the Cataract Laserphaco Probe.

Patricia Bath’s passionate dedication to the treatment and prevention of blindness led her to develop the Cataract Laserphaco Probe. The probe patented in 1988, was designed to use the power of a laser to quickly and painlessly vaporize cataracts from patients’ eyes, replacing the more common method of using a grinding, drill-like device to remove the afflictions. With another invention, Bath was able to restore sight to people who had been blind for over 30 years.

Betty Rozier and Lisa Vallino invented the Intravenous Catheter Shield:

Betty Rozier and Lisa Vallino, a mother and daughter team, invented an intravenous catheter shield to make the use of IVs in hospitals safer and easier. The computer-mouse shaped, polyethylene shield covers the site on a patient where an intravenous needle has been inserted. The “IV House” prevents the needle from being accidentally dislodged and minimizes its exposure to patient tampering. Betty Rozier and Lisa Vallino received their patent in 1993.

Krysta Morlan [who has cerebral palsy] invented the cast cooler:

Krysta Morlan’s first invention was a device that relieves the irritation caused by wearing a cast called the cast cooler. The portable cast cooler works by pumping air into a cast through a plastic tube. Krysta Morlan was in grade 10 when she invented the cast cooler. Still in high school, Krysta Morlan then invented the Waterbike, a semi-submersible, fin-propelled pedaled vehicle.

Françoise Barré-Sinoussi was half of the team that discovered the human immunodeficiency virus (HIV):

Françoise Barré-Sinoussi and Luc Montagnier discovered human immunodeficiency virus (HIV). Virus production was identified in lymphocytes from patients with enlarged lymph nodes in early stages of acquired immunodeficiency, and in blood from patients with late stage disease. They characterized this retrovirus as the first known human lentivirus based on its morphological, biochemical and immunological properties. HIV impaired the immune system because of massive virus replication and cell damage to lymphocytes. The discovery was one prerequisite for the current understanding of the biology of the disease and its antiretroviral treatment.

Feel free to add to it in the comments, or link your own posts regarding Ada Lovelace Day!

Aware of what exactly?

Cross-posted at Zero at the Bone and Feministe.

Well, it’s Disability Awareness Month in Indiana, USA. Sound Bend, IN, network WSBT are raising awareness with a story about Sarah Schelstraete, who has Down Syndrome. It’s called Sarah’s Story: Hard at work despite disabilities. One thousand points if you can anticipate from the title what my major problem with the article was.

Now, impairments can make particular kinds of work, or work at all, difficult for people with disabilities, particularly when accommodations – be they ramps or particular lighting or a chair or whatever – are not provided. Leaving aside any accommodations Ms Schelstraete might utilise (it’s irrelevant and really none of our business) there’s no indication as to what impact her impairment might have that would make it hard for her to work at her job as the article title suggests. In fact, the article doesn’t tell us what her job actually is, but moving right along. Now, I’m not saying she definitely doesn’t have challenges related to her impairment, but rather that I have a problem with a particular narrative that this article taps into. This is a narrative that erases Ms Schelstraete’s individual situation, whatever that might be, in favour of conveying disability as something the poor dears must overcome! in their tear-inducing (to abled people) efforts! to live a normal life! which includes paid work!

Perhaps it is that push to gloss everything over that skews the narrative here, but let’s take a gander at the actual information the article provides. Ms Schelstraete is clearly a ‘dependable employee,’ as her supervisor Donna Martis says. She does her job well; interviewees are enthused about her being good at her job. There is not really a need, it would seem, to say that she is doing a good job in spite of her being disabled. She is good at her job. And she is disabled. Just like she is good at her job and a woman, good at her job and a daughter, good at her job and a resident of Indiana, good at her job and, I don’t know, maybe she likes detective shows or cupcakes or whatever. But time and again when disabled people are featured in the media, there’s a kind of shock that “those people” could achieve anything of worth – worth defined according to ableist standards around paid work, of course.

As such, I have a problem with wording like this in the article:

‘Martis said Sarah is a valuable employee who knows how to do her work, and requires little supervision.’

Or how about this?

‘Like any hard-working employee, Sarah knows one big benefit of having a job is making money. She often uses her paycheck to buy DVDs and CDs.’

Yep, just like everybody else – yet her competence must be uniquely examined and confirmed by all these people, despite her having been employed by the same laboratories for seventeen years. This is yet another example of the media trope in which PWD are achieving! through! the hardship! Would you like to know what a hardship is? For many PWD, sometimes more than our impairments themselves? Putting up with that condescending bullshit and fighting to be approached as actual people who should be approached with respect. Because handing out “well done!” stickers has nowhere near of the same value as does being treated like a person with things to offer.

These kinds of awareness-raising stories do little more than give abled readers/viewers/listeners a lift, a feel good story they can tuck away out of mind when they’re done. It’s easier for PWD to be a one-dimensional story, those people put there to light up abled people’s worlds with inspiration, prompting a whispered gratefulness that they’re not one of them. How about we raise some awareness of the social oppression attached to being disabled? Awareness ought to be raised about how many disabled people are out of work because, as Ms Schelstraete’s employment consultant Stacey Simcox says, many ‘don’t give someone the chance because they already have the mindset that they’re not going to be able to do the job even with the support’. About how disabled people so often are treated as though they’re being done a favour by being employed at all. About how work can be a struggle or impossible because of workplace bullying. Because of refusal to provide decent wages. Because employers won’t grant equitable working conditions or accommodations.

And let’s raise awareness about the valuation of work. There’s a nasty thread that runs through these kind of stories that holds disabled people to be societal leeches, a drain on resources. This kind of thinking defines human worth in terms of money, as though people are only good for how much money they contribute and how little they take from welfare or healthcare programs and such. It’s the kind of argument used against poor people who need that assistance, it’s the kind of argument that has led to women’s unpaid work in the home being so devalued. It’s thinking that tries to shame those who utilise thoroughly deserved government assistance, as though it doesn’t exist for a reason.

I am continually astounded by negative reinforcement of difference, but barely ever really surprised. You’d think efforts to raise awareness would require being aware.

Integrating Primary and Mental Health Care

The increased integration of mental health care into primary care is one of my pet issues. Currently, primary care providers (PCPs), also called general practitioners, provide over half of mental health treatment in the United States – which results in up to 50% of mental health problems going unindentified, undiagnosed, and untreated through the primary care system. This is a wasted opportunity, as PCPs have significant opportunities to identify behavioral health problems early and provide interventions and treatments to prevent further deterioration.

This indicates a significant split between the physical health care and mental health care systems, where people are expected to go to their PCP for physical health issues and to self-refer to a mental health care clinic or specialist for mental health treatment. This is problematic for a whole host of reasons – primary among them the simple fact that this system simply isn’t working – even though the prevalence of mental disorders in primary care is somewhat higher than the overall population, PCPs are ineffective at identifying those people and providing them with treatment. Expecting people to identify themselves as experiencing a mental disorder, overcoming societal stigma to seek diagnosis and treatment, and assuming they have the ability to access mental health services through a fragmented and poorly financed system erects barriers to treatment that are likely insurmountable to someone experiencing an untreated mental health problem. Unsurprisingly, these barriers are likely more pronounced for already vulnerable populations such as the elderly and low-income minorities.

There are a lot of benefits to better integration of mental health care into the PCP’s role. The PCP is usually the patient’s first contact with the health care system and an individual is much more likely to know how to access care from a PCP than from an unintegrated mental health system. Patients are often more willing to attend appointments with and follow up with their PCPs because of the removal of stigma from receiving treatment. Other patients may not have meaningful access to a separate or nonintegrated mental health system, either due to financial barriers, long waiting lists, or other barriers.

The most significant problem, in my view, is the expectation that an individual should be able to determine they are experiencing a mental health problem. Given that the majority of PCPs, who have medical degrees and extensive training, fail to identify and diagnose mental health issues, expecting untrained laypeople to do so – while they are experiencing the mental health problem – is beyond absurd. It is even more absurd given that many mental health issues have a physical component. Depression results in fatigue and appetite changes, as does mania. The physical experience of a panic attack is often interpreted as a heart attack. Auditory or visual hallucinations could easily be interpreted as problems with the sensory organs themselves. This is sometimes heightened by an individual’s cultural context, as many Asian cultures describe the experience of depression almost exclusively in physical terms. Expecting an affected individual to untangle the complicated interplay of physical and mental effects and diagnose themselves with a mental health problem prior to seeking treatment is bound to fail.

Another argument in favor of integration is the huge overlap between physical and mental health problems. Estimates of this comorbidity vary wildly, but range somewhere from 20% to 80% of primary care patients (useful data, no?). Having a patient access two separate mental health care systems for their treatment ensures fragmented treatments that may contradict each other and are certainly not coordinated for maximum effect. Better integration would ensure treatments for physical and mental health issues complemented each other and treated the patient as a whole person.

This seems like an uncontroversial and common sense suggestion. It was embraced by the United States Surgeon General in 2001 and by the World Health Organization in 2008, but has seen little progress or momentum since then. Some local treatment systems are taking steps towards integration, such as these trainings done by the British Columbia health system, but there have been few steps towards addressing this issue in the larger health system.

Recommended Reading for March 23, 2010

Yes I Am:

And that’s the heart of it. I don’t want anyone to think I’m lazy. I’m already working part time because I simply cannot cope with full time work any more, and I can’t stand the questions I get about it. I’m not open about my health conditions, and I have no acceptable answer when I’m asked what I do when I’m not at work. I’m not studying. I’m not bringing up children. What’s my excuse?

I have been doing so much soul-searching lately, and trying to come to terms with all the changes that have been going on. Trying to come to terms with the word disabled. I still can’t say it out loud, you know, that I have disabilities. A workmate once laughed when I mentioned something about disability discrimination, because I’m not in a wheelchair or anything. Of course I’m not disabled.

I don’t think you understand the concept here: [Comments recommended]

When I call you to complain that the road repairs on State Road 50 have made the State Road 50 and S Park intersection unsafe for wheelchair users, pedestrians and bicyclists, and has already resulted in injuries, the proper response is not, “I guess you’ll just have to drive for awhile.”

In the news:
UK: Wheelchair-bound woman told to take train to reach opposite platform [Headline fail.]

Julie Cleary, 53, was hoping to use a new £2.8 million lift at Staplehurst train station in Kent so she could get out of the station after a day trip to London but was told she could not use it because of “health and safety”.

Miss Cleary was told instead to catch a train to Ashford International Station, 15 miles away, and back so she would end up on the right platform which was just 20 yards away.

Australia: Parliament House not ready for Kelly [Thanks Deborah!]

KELLY Vincent is set to win an Upper House seat, but at this stage she physically cannot get there.

While the final results could still be weeks away, the Dignity 4 Disability candidate is the likely winner.

At 21, she will become the youngest female elected to Parliament.

She is also believed to be the first person in a wheelchair, but Parliament House is not yet disability-friendly enough for her to make her way to the chamber.

US: Paralyzed Graffiti Artist Draws With His Eyes

A group of artists and hackers have crafted a gadget that lets a paralyzed graffiti artist continue making art using only his eyes. And it costs about as much as an iPod shuffle.

Zach Lieberman of the Graffiti Research Lab started working on the EyeWriter with one man in mind: Los Angeles-based graffiti artist Tony Quan. In 2003, Quan was diagnosed with Lou Gehrig’s disease, leaving virtually every muscle in his body paralyzed except for his eyes. Lieberman and developers from Free Art and Technology, OpenFrameworks and the Ebeling Group were inspired to create low-cost, open-source hardware and software for eye-tracking to help Quan draw again.

Recommended Reading

Please do not be on my side

The American Academy of Pain Medicine wants better treatment of chronic pain. So do I.

I hate that fucking joke so much.

World, please stop saying, “Achieving [something you think is awesome but it’s actually pathetic] is like winning a gold medal at the Special Olympics!”

A Special Olympics gold medal is not a dummy prize. It is awarded to world-class* athletes who have managed to beat dozens of other world-class athletes to achieve a distinction to which very few people can aspire. Special Olympics gold medallists think their medals are awesome because they actually are awesome.

March 15: Sue Boyce (b: 1951):

Happy birthday to Australian senator from Queensland, Sue Boyce, who has made disability rights issues a priority of her legislative work. She’s currently serving on the committee to consider Australian immigration laws on the subject of disability.

Should the Social Model of Disability permit Autism treatment?

Sometimes, it is hard to differentiate between direct and indirect consequences of a condition, between impairments and disabilities. IP uses autism as an example of a condition that doesn’t create intrinsic suffering, and I commented that I disagreed there, although this issue is hotly debated within the autistic community. I, for one, suffer from chronic overload, which does not always have a known trigger. It could be that, in an ideal world with low stimulation, I would not suffer from this symptom, but I often cannot tell exactly why I suffer from overload.

Please don’t say you’re sorry

Becoming committed to surviving cancer was not an easy feat. Dealing with other people’s reaction to my cancer was one of the things that made it an especially difficult process. When the people around you are treating you like you’re already on death’s door, it can be hard to see past the fatalism. If I had a dime for every person that said “I’m so sorry” or “Poor baby!” when they found out I had cancer, I’d be richer than Bill Gates.

Time to die? Plus Assembly, Bunnies, PJs and a lovely coffin:

People often have two responses when I talk about my disease and the pain, one is to ignore, like I never talked. The idea that it hey it is just Elizabeth, ‘EFM’ after all, and her condition is weird and painful (and thus somehow pain is okay..for ME). This is set up socially in terminal disease culture where immediately the HEALTHY person is given counseling, has a stack of books of dealing with THEIR pain. There aren’t really any books on dealing with pain of terminal levels, or the path one has to take in order to live while dying. The attitude is, ‘They will be dead so….’ – what is unspoken is, ‘so YOUR pain, you healthy people, at their loss needs to be addressed as does the horror of those late nights of groans and agony we will never know’. For those who HAVE the groans and agony, the idea that only the person NOT in pain is having ‘issues’ is a rather hurtful one emotionally.

QuickPress: [Ontario-only] CWDO CONTEST: “Accessibility Means…” An Exhibition

Passionate about accessibility?
Creative (even just a little bit?)

Then this contest is for you!

CWDO is creating an exhibit on what “Accessibility Means…”

The presentation will be displayed at Toronto’s People in Motion Show in June, 2010 and brought to other Awareness events around Ontario.

FIRST PRIZE: $250
2nd Prize: $100
$50 to all other entries selected for the exhibit

DEADLINE: Extended to March 31, 2009 (midnight, EST)
Continue reading QuickPress: [Ontario-only] CWDO CONTEST: “Accessibility Means…” An Exhibition

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.