Many disabled people have rejected this model. From the Taxi Driver Training -- Democracy, Disability and Society Group, UK

The social model of disability sees disabilities as normal aspects of life, not medical problems requiring "treatment," with the real problems coming from inaccessibility and ignorance of disabled people. From the Taxi Driver Training -- Democracy, Disability and Society Group, UK

I wanted to talk about the social model of services and supports for people with disabilities, and barriers to implementing it.

When you think about disability internationally, most disabled people in countries around the world are taken care of by their own families and their own communities. In Alabama, where I’m from, and in many of the poorer states, they didn’t get the medical model at all until federal funding in the 1960s. Prior to that, all you had was a kind of quasi-social model, with families and neighbors taking care of their disabled children, the same way they did in the 19th century and from time immemorial. A new social model of services and supports would essentially work like an enhanced version of that, with disabilities normal phenomena that communities live with and provide for.

In the first world countries, as families are working almost entirely outside of the home, they have no recourse but to use government services to help take care of their disabled children and adults. In Alabama, the attitude is that the most harsh, spartan medical model is all they can afford, and that they can’t afford to innovate. They have missed an opportunity to save money by re-imagining a social model that would put the power back in the hands of families and people with disabilities, instead of forcing them to spend on treatments that the medical model wants for them.

Across the country, budget cuts are removing the medical model more and more from our lives, because the states can no longer afford the kind of medical services that they’ve been paying for. The medical model won’t be the force it has been without enough public funding. So there’s more need than ever to implement a new social model of services and supports. In one of the conferences that I attended (TASH Boston ‘02) there was a session on what drives people to put their loved ones into nursing homes. And the number one reason found in studies was that when someone becomes incontinent of bladder and bowel, the family doesn’t want to deal with it, and puts them in a facility. There was one story where a mother wanted to put her autistic son in a facility just because he couldn’t figure out how to zipper his pants, though he could otherwise engage in self-care. This is the institutional bias, up close and personal, and it is ridiculous. We can no longer afford to put people with disabilities in segregated, medical model institutions. The funds saved by turning the institutional bias on its head and closing more of these terrible, outdated, freedom-killing institutions is great. We can’t afford these awful dinosaurs financially, and we can’t afford it in the human toll, in the human potential and spirits that are locked up.

To escape that fate of being put away forever in a nursing home, I had to fight Alabama Medicaid policies that would cut off home care services at age 21. My campaign, Nick’s Crusade, led to the Dupree v. Alabama Medicaid lawsuit, which used the Olmstead decision to end the practice of Alabama cutting off ventilator dependent people from in-home services once they turned 21. It was a victory that helped half a dozen people stay in their homes, but it didn’t solve the underlying problem, that even in the home, the medical model of home nursing care tends to segregate, restrict and limit the liberty and potential of people with disabilities.

I ended up having to leave college because of problems with home nursing care, and eventually I began to outlive my family’s ability to take care of me, and ended up relocating to New York City in August, 2008. Because of difficulties getting home care approved and started, home nursing agencies that are dysfunctional and cruel, and relentless ablism faced by me and my partner Alejandra, my first 378 days in New York were spent in a city rehab hospital. It was my first stent in a facility, and I learned a lot about the system that keeps unnecessary institutionalization going and told the world in The First Video Blog Series From Inside An Institution In History. Make especially sure to watch my videos What Life In An Institution Is Really Like, And Why This Entire Model Should Be Replaced and Too Many Setbacks To Count (about the barriers and delays to getting home, with music).

Because Alejandra and I love each other, we made the decision to spend our lives together, as many people with and without disabilities do. However, most people with disabilities living in the U.S. run into the so-called “marriage penalty” if they receive federal Social Security benefits, which are reduced by one-third if two recipients marry. Choosing to declare our commitment to each other despite this policy, we held a commitment ceremony in Central Park on June 6, 2010. It was also an opportunity for others in the community to learn about and share their experiences with this injustice.

Getting the supports needed to maintain my health and safety, attain freedom to access the community and resume college remain problematic. I write and draw webcomics, such as Theodore Roosevelt and the Rough Riders vs. Zombies. I was going to show my work from a table at the MoCCA Festival, and ended up canceling because we didn’t have the help for getting me up in the chair and out to the festival. For me as a disabled man, “freedom,” means that I have good caregivers around me that can help me do stuff. Without those people, I’m stuck in my room at best, and, at worst, dead.

Nurses, personal care attendants, and other home caregivers will always remain enormously important in any model because in first world countries the cost of living is high, and thus the people doing the bulk of the care will be the ones who can do it without losing their apartment. Paid supports should be budgeted by the disabled person (see individualized budgets and the Cash & Counseling program) so that both the caregivers and the patient aren’t constantly battling middlemen–agencies and Medicaid, and so the patient can give their best staff higher pay and bonuses. This essay isn’t meant diminish the importance of nurses and PCAs but to re-imagine them as part of a support community that form around people with disabilities; with families and communities that refuse to shelve their people in prison-like nursing facilities, that refuse to use a strict, heartless medical model inside the home, that say NO to materialism and profiteering, and instead focus on care and caring. Personal care is incredibly intimate and sensitive, caregivers see and touch and care for wounds, deformities and vulnerabilities that no one else sees, this is soulful and special work; it should never be callously commodified or turned into a cold assembly line in a nursing facility. The people who are good at going into someone’s home and making them clean, comfortable, giving them care and freedom, are very special people. In a new social model, friends and neighbors of the disabled person partner with and lend their support to these special caregivers, helping them and assisting them to assist their patient. The caregivers in turn helping the friends to help their patient. They care about each other and collaborate to help the disabled person. The community loves and supports each other.

Relying on Medicaid to give me ALL the assistance needed to live a real life in the community will always be difficult as long as Medicaid is locked-in to the medical model. It’s near impossible without friends and volunteers in your community lending some support. What is needed is the social model: normalization of disability: for society at large to start seeing people with disabilities as equal members of families and communities, instead of undue burdens. If someone in the community had cared about the kid who couldn’t manage the zipper on his pants, he wouldn’t have been at risk of institutionalization at great cost to his community. If the community would give their time and love more, we’d need Medicaid, the increasingly dark, Kafkaesque bureaucracy that pays for services for disabled people, less.

There are plenty of ways for the community to support people with disabilities. When I was hospitalized for several months in early 1992, Bettie Hudgens, the founder of the Communications department at Spring Hill College, where my mom taught, created a sign up sheet so that volunteers would visit me every day, so I would have someone checking in on me during the hours mom was teaching. The signup sheet allowed the community to organize around me so that every day was covered. We need that kind of community building now more than ever.

Communities will eventually be forced to choose, will they pay more and more for Medicaid as its red tape continues to render it hilariously dysfunctional like a Soviet department, or will friends and neighbors pitch in to help the elderly get in and out of bed, and change soiled clothes so they wouldn’t have to be segregated in institutions, so their people with disabilities will have less involvement with the heartless Medicaid bureaucracy and be less exposed to the whims of the politicians that fund them. It’s up to us to implement a new social model, as the old models begin to collapse.

Nick

Hollywood Images of Disability (CHF EDIT) from salome chasnoff on Vimeo.

Everyone interested in disability rights should watch this 18min short “Hollywood Images of Disability,” about Hollywood’s terrible treatment of disability, which is normally depicted as something so deformed, so unspeakably terrifying that disabled characters have to be cured (Heidi, Monkey Shines, Avatar, and zillions of movies) put away forever (Rain Man) or euthanized (Of Mice and Men, Million Dollar Baby and countless other examples). Note: this short comments on clips from many different movies with R and PG-13 ratings, many of which contain sensationalist depictions of people with disabilities, exaggerated vulnerability of disabled women–Uma Thurmond playing a naked blind woman being vulnerable and threatened, extreme violence and murders of people with disabilities, male and female, and will be disturbing for anyone with a conscience.

I saw Rain Man (1988) on the big screen when it came out (I was 6 years old and I didn’t understand much beyond the beautiful imagery). When I saw it again as a young teenager it impacted me a lot. I really remember it vividly.

Rain Man is the autistic brother that was just discovered by cool dude Charlie (Tom Cruise, who back in the 80s, we all worshiped as the coolest guy ever and wanted to emulate, along with Michael J. Fox & Matthew Broderick–in 1990 I once made mom’s hairdresser make my hair like Michael J. Fox’s). Charlie removes Rain Man/Raymond from the nursing home and they go on an amazing adventure that as a teen I could only dream of. Ray is loosed from his cage! While most men in the audience are undoubtedly identifying with Charlie, the cool as ice, young business shark of the ’80s (see Gordon Gekko) and his struggles and interests, I’m identifying with Ray, and strongly. For the first time, Ray can move around and develop out in the real world: he’s experiencing life with all its thrills, very real dangers, wonderful strangeness, opportunities, fulfillment and sexual excitement. He gets to fail at driving the old Buick convertible, win fat stacks of cash at a beautiful Las Vegas casino. He’s able to really live, warts and all, unlike the nursing home where there is nothing but soulless routine and the dictatorial control of the facility’s staff who don’t really know or care for Ray.

The scene that caught my attention the most was when Ray ends up alone in the casino elevator with a beautiful woman, Charlie’s girlfriend Susanna (Valeria Golino) who brakes the elevator and slow dances with him and kisses him. It is brief but an electrifyingly sexy moment. I’ll go into a great amount of detail so ya’ll can understand how a young disabled man saw these images. They used every camera and make-up trick to make the actress look like the perfect hot date of the 80s style. In this elevator Ray is confronted with a very powerful woman, empowered, living life; she dances with and kisses Ray maybe out of curiosity, maybe because it feels enormously powerful to initiate a man into the world of women. She is open to being inclusive. Possible T-Shirt: NOT A SLUT. INCLUSIVE. When you’re a young disabled man, you see her in the elevator and look at her like a vision of feminine power and inclusivity, a chance at entering the adult world. Not long into the scene, she restarts the elevator, looking a little sad and disappointed that Ray didn’t really kiss her back and touch her, and the moment was over. I was transfixed (nearly every male probably was–it immerses the audience in the ultimate fantasy of a woman actually wanting them).

This was the first time in my life that I had seen a woman interested in giving that kind of attention and affection to a disabled man. It was like a fairy tale come true, Ray doesn’t have to be locked up in the gilded cage at the nursing home, he had a real CHANCE at life, opportunities to see and do amazing things and feel and love. To me, the opportunities to succeed were as important and thrilling, if not moreso, than actually success. At the time, 1994, I was entering puberty and very focused on all these issues, while living in an environment with the myriad barriers so common to the disability experience, plus being guarding by nurses 24/7 had already cut me off from girls, from kids my age entirely in middle school. This movie made me think I could one day escape the cage and talk to women in elevators.

But the movie closed with Tom Cruise putting Ray back in the cage, portrayed as the right thing, the courageous and hard thing to put him back in the nursing home, the more “appropriate” setting. How well Ray did in the real world evidently didn’t matter; he had 1 autistic meltdown (ONE) and accidentally broke the precious coffee maker, and that was the end of that. Charlie is depicted as a hero for doing this and ending Ray’s opportunities for a life, forever. It’s all about Charlie’s journey, the familiar Quest o’ Redemption trope that is as old as literature itself, and in the United States typically involve a journey by car across the American continent. Ultimately, as the short film “Hollywood Images of Disability” illustrates quite well, disabled characters in Rain Man and other Hollywood movies aren’t people as much as Oscar bait for a “difficult” portrayal (for the Raymond role, Dustin Hoffman won the Oscar for Best Actor; “The diseased/addicted/mentally impaired always get the Oscar.” — Hollywood Rule Book, Vanity Fair) and disabled characters are mainly used as plot devices to facilitate the hero’s development. In Rain Man, Ray, his struggles, his interests, aren’t considered at all; the point of the story is that Charlie starts off as a soulless corporate raider, grows to love Raymond, and at the end has evolved into a sensitive, mature adult able to make the “right” “mature” choices in life and love, and, grotesquely, the “mature” choice is to have the lawyer transfer custody of Raymond permanently to the nursing home. I thought it was particularly cruel to show Ray the world only to yank it away. To be expected, in a society where we aren’t wanted and barely accommodated enough to survive, but still a harsh introduction to reality for young teenaged Nick.

Read about the all-too-common “Bury Your Disabled” trope in popular culture, and try to raise awareness that it, along with other disability tropes that are harmful (and/or just ABSURD), are actually really wrong and awful, and should go away….

Nick

I wish Congress would have put protecting the most disabled Americans ahead of uninsured able-bodied people, but they didn’t. For Congress, people like me are invisible.

The states slashing Medicaid the deepest (the Southern states) are the ones that will see the most new Medicaid eligibles thanks to “Health Care Reform.”

PERFECT
FISCAL
STORM

That means life for people with disabilities in the South is about to get even worse. Good thing I fled Alabama.

Medicaid, especially in the South, is increasingly in tatters. State Medicaid programs were slashed to the bone in the 90s thanks to “the Republican Revolution” and now there’s no fat left to trim, so they’re taking chainsaws to muscle and bone.

In the Wall Street Journal, it discusses a woman who’s had to sit in her own waste all day thanks to state budget cuts. I suppose the state hoped her bed sores and inevitable sepsis take her quickly, otherwise Medicaid will be on the hook for expensive hospital stays that would dwarf the cost of just leaving her f#$%ing home care uncut in the first place. I’ve seen this happen over and over again to people I fight for. It’s left me scarred to depths few of you could ever understand.

Here’s the Wall Street Journal piece, by Clare Ansberry.

FLORENCE, S.C—Tandem forces of shrinking state budgets and rising health-care costs have collided and struck a small brick ranch house in this rural town, home to Barbara Hickey.

Born with cerebral palsy, Ms. Hickey, now 67 years old, is confined to a motorized wheelchair. She lives alone and relies on certified nurse’s assistants to get her in and out of bed, bathed, clothed and fed.

In December, she received a letter from the South Carolina Department of Special Needs and Disabilities, saying her weekly 50 hours of personal-care help was being cut to 28 hours. That meant Ms. Hickey would get help for two hours in the morning and two hours at night. If she needed to use the bathroom in between, she would sit in a soiled diaper.

After several days of reduced care, the local office of the South Carolina Legal Services appealed the cuts on behalf of Ms. Hickey. Her hours have been restored pending the appeal.

Home health care—funded largely by Medicaid—generally costs less money than institutionalizing developmentally disabled people like Ms. Hickey. But the political reality is that it’s easier to cut back home services than to close a 24-hour facility, which can leave people with nowhere to go. Thus, some of the biggest cuts around the country are happening in the basic services that help the disabled cope at home.

South Carolina says it has little choice but to cut funding for Medicaid. It faced a $563 million deficit for the current fiscal year, and like other states must have a balanced budget. Medicaid, the joint federal-state health-insurance program for the poor and disabled, already consumes about 20% of its $5 billion budget and is one of its fastest growing costs.

The health-care program is on course to consume 40% of the budget of South Carolina in five years, and leaves little for anything else, says Gov. Mark Sanford. “It could force legislators to either cut further into bone in the areas of education, law enforcement and economic development, or raise taxes. Neither option is palatable.”

The state already is making painful cuts elsewhere. The state’s Department of Juvenile Justice has closed five group homes and cut 25 after-school programs. There are 1,000 fewer public-education teachers this school year than last.

Across the country, budget-strapped states are focusing on Medicaid. Created in 1965, it is now a $379 billion program, including state and federal funds. State spending grew an average 7.9% in fiscal 2009 as the economic crisis hit and more people signed up for Medicaid.

It was the highest growth rate since the last downturn six years ago. Spending is expected to keep growing at that pace for the next decade because of rising costs and growing enrollment.

But states don’t have much flexibility when it comes to what they can and can’t cut inside Medicaid. Although it is a state-managed system, the federal government pays a percentage of each state’s total costs and makes many of the Medicaid rules. Under federal Medicaid law, states must offer inpatient and outpatient hospital care, X-rays and lab services. They also have to cover nursing-home services and meet certain standards, such as staffing ratios.

There are further constraints this year. States can’t reduce Medicaid eligibility this year because of a condition attached to federal stimulus money, and under health-care reform, they can’t eliminate existing programs.

States also run up against other laws when they make deep cuts. Lawsuits have been filed in South Carolina, Florida, Connecticut, Virginia, Mississippi and New York, claiming Medicaid cuts make it impossible for those with disabilities to live at home and that it violates the Americans with Disabilities Act.
(I know the lawyers behind this class action. I say RIGHT ON!!!!)

Logically, states would cut the most expensive, least efficient services and keep the most cost-effective. But because of mandates and the need to save money quickly, that isn’t as easy as it sounds.

For example, home care—because relatives often provide some of the care—is generally cheaper than housing people with developmental disabilities in institutional facilities. In 1993, the average Medicaid cost for each person with disabilities was $48,500. At the end of 2008, the latest figures available, it cost an average $55,000. Adjusted for inflation, that actually represents a 23% decrease, largely as a result of more services being shifted away from costly institutions to the home, says Charlie Lakin, director of a University of Minnesota program that tracks services for the developmentally disabled.

But many in-home services, though critical to those receiving them, are optional. Furthermore, there aren’t many minimum standards set for in-home services, so it’s easier to cut them without violating funding requirements. There are fewer immediate consequences for the state when it cuts those services because families won’t generally abandon disabled relatives and leave states on the hook for housing.

Cutting home care could ultimately prove penny-wise and pound-foolish, however. It could push more people into institutions or large group homes because that is where services are guaranteed, even though institutional care is more expensive.

…

The department’s fiscal problems have been exacerbated by past spending decisions. A special state audit released in December 2008 showed that the department hadn’t provided many new services for which it had received funding and, as a result, it couldn’t recoup millions in federal matching Medicaid dollars. For example, the state spent less than $700,000 of $10 million allocated to serve autistic children, which resulted in the loss of $13.6 million in federal matching money. The state said it couldn’t ramp up the program fast enough because it couldn’t find qualified service providers. After the audit, the executive director of the department and four of the department’s seven commissioners resigned. The department has since implemented most of the recommendations made by the Legislative Audit Council.
(This same thing nearly happened with the NHTD –Nursing Home Transition & Diversion– waiver here in New York: the bureaucracy imposed on providers was SO ridiculous than very few participated, and the rules were so cumbersome for patients that, in the program’s first two years, only one patient downstate–me–transitioned home from a facility!)

Recent state cuts have targeted developmentally disabled people living at home. In December, families were told that some of their in-home support was being cut by as much as half.

Brian Phillips, a 37-year-old with cerebral palsy, was told that he was losing half of his personal-care hours. He can work a TV with a remote control but can’t dress or feed himself, or get in and out of his bed or wheelchair.

He lives alone with his father, James, 70. The elder Mr. Phillips, who has had open heart surgery and whose heart functions at only 26% of its capacity, cannot lift Brian on his own. He appealed the cuts and the hours were restored pending his appeal.

“These are cuts no one wants to make. They are very difficult for agencies to implement and they are very upsetting and very, very difficult for our families,” says Lois Park Mole, spokesperson for the state Department of Disabilities and Special Needs.

People will generally do what they must to keep their disabled family member at home regardless of the cuts. At some point, however, even the most dedicated may not be able to continue, especially as their own health deteriorates.

…

In Aiken County, Board of Disabilities Executive Director Ralph Courtney says waiting lists for services are growing. There are more than 5,000 on waiting lists for various services, from residential programs to in-home programs.

“We want to give families hope to keep their family unit together, but in reality there is very little we can put in place to assist them,” says Mr. Courtney.

In-home support is cheaper, he says, than the alternative: group homes and larger residential programs that need to be maintained and staffed 24 hours a day. “But you can’t put people out on the street,” he says. “You can cut in-home support.”

Even though Ms. Hickey lives alone and needs help with nearly every aspect of daily living, it cost less to have her live in a house with 50 hours of personal care help than in a nursing home. Institutional care in South Carolina costs about $100,000 per person a year, compared to $39,000 for home and community services, according to the University of Minnesota research.

Read the entire article here: Disabled Face Hard Choices as States Slash Medicaid

How does littering the entire country with families destroyed by Medicaid cuts, jive with HEALTH CARE REFORM?

Honestly, I have gotten so many hate messages over the years, I’m now convinced that the Americans will continue to react with cold indifference, or, worse, celebration–”good riddance! No one is gonna force me to pay for you useless leeches!”–as Medicaid policy continues to cull out people with disabilities like me, UNABATED.

And you wonder why I’m so angry that I’d consider reconstructing the U.S. entirely? It’s because my every day experience involves the above Kafkaesque Medicaid policies harming me or the people I care about!

Nick

On Disability Unity

NextStep blog
WE ARE ALL IN THIS TOGETHER

Finding My Way: Journey of an Uppity Intellectual Activist Crip
Human Rights

Whose Planet Is It Anyway?
Supporting Allies

Insights

Sanabitur Anima Mea
Look Closer (my favorite post in the ‘swarm)

Metamorphosis (Bob Kafka)
On the discrimination behind the institutional bias

Documenting The Action

PhilosopherCrip
Atlanta Action Days 1 & 2
Atlanta Action Day 3

The Roving Activist’s Blog
I am excited
Live from Atlanta

Today.com’s Official Disability Rights Blog
Action Day One: Conversations with Self
Action Day 2

Finding My Way: Journey of an Uppity Intellectual Activist Crip
Power is sexy and…

Composite: thoughts on poetics & tech
ADAPT in Atlanta kicking ass, taking names

Comment below to add a post to the ‘swarm!

Segregating people with disabilities in institutions solely because they need daily help, especially given the 21st century technology that can assist them and the widespread success of people with disabilities living in the community, is fundamentally unjust, immoral, overly costly, and, according to the Olmstead ruling, illegal under Title II of the ADA.

Olmstead, the case of two Georgia natives who wanted the state to stop segregating them, affirmed all Americans’ right to receive care in “the least restrictive setting” (i.e. not in prison-like institutions) and ordered all states to end unnecessary confinement of their disabled citizens (which it deemed illegal discrimination) at a “reasonable pace.” Most states have done little to nothing to comply. The institutional bias of the system is deeply entrenched, and even though the Olmstead decision came down 10 years ago last June, millions of people with disabilities are still kept out of sight, out of mind, stuck in institutions. “A right delayed is a right denied,” Martin Luther King, Jr. would say.

Georgia’s system, the focus of the Olmstead case, remains notoriously bad, insisting on expensive life-long institutionalizations that strip people of any choice in their daily lives, block opportunities to grow and become self sufficient, and kill hope. And most states are similarly awful, especially in the South. They refuse to heed the Supreme Court’s orders, reminiscent of their failure to follow school desegregation rulings “with all deliberate speed.”

We can no longer ignore illegal segregation and the community support services states must use to prevent it. We can no longer ignore Olmstead. We mustn’t put long-term care on the backburner and not include it in this year’s health care reform; telling us to wait another decade or more is deeply unjust. ADAPT will be in Atlanta, October 10-15, demanding that this change. You can help raise awareness around the Fall National Action by blogging!

The ADAPT Blogswarm, Fall ’09, will collect posts raising the issues of the institutional bias, ablist and unjust institutionalization, lack of community-based services, long-term care reform, the Olmstead decision and posts highlighting ADAPT’s Fall Action. Blogswarm posts will all be listed here, on nickscrusade.org, on October 12.

Your blogging is incredibly important to raise awareness of these issues (often swept under the rug). Please contribute to the blogswarm!

For instructions on how to participate, see
ADAPT Blogswarm, Fall Action 2009

Thank you!

Nick

Here’s hoping I’m out before I pass 12!

Nick

The recent addition of the U.S. as a signatory to the UN Convention on the Rights of People with Disabilities (CRPD) has been much ballyhooed. Any idea if/when Article 19 of the CRPD Treaty will be enforced? That’s the article that guarantees me community choice, the freedom to live in my community, without fear of being segregated in a nursing home because the government will only provide care in institutions. You know, the right to “the most integrated setting” that TEN YEARS AGO the Supreme Court ruled we’re entitled to under the ADA?! This is particularly bitter for me because I am currently STUCK IN AN INSTITUTION.
Why agree to Article 19 when we are not following it?! The feds continue to look the other way while poorer states cut off community services for the severely disabled just because they’ve turned 21, and leave them no choices but death and/or an institution. I had to fight that policy years ago in Alabama, and won, but apparently this despicable practice is still going strong in Illinois, as I recently read on VentWorld:

My son turns 21 at the end of August and will lose his current funding source. There are no adult waivers or funding that would provide him with the same level of support he has now. Trying to get info to prove that he would NOT be safe in a skilled nursing facility or nursing home. I found a web site where I can look up the name of a home to find out their staffing levels, ratios, violations, etc. but I have to know the name of the homes first. When I do search for homes the results are not specific to ones that can handle complex ventilator care. The state of Illinois wants the cheapest plan for my son which means without proper documentation they will only provide him with minimal funding for nursing care in our home. He currently has 114 hours per week and 336 respite care hours per year. The state is saying the adult program only allows for about 30-40 hours per week – more if we use non-skilled people. The state wants to find the cheapest way to care for him and if that is a nursing home then I must have proof that the staffing ratios will not be adequate for him. Plus there are no facilities anywhere close to where we live so he would have to leave his community, his friends, his family, his job, etc. He is very social, wants to continue living at home and just because he has a birthday his life is being turned upside down. If you know of facilities that take patients 21 years of age or older with complex ventilator care and what level of staff and their ratios please respond. Thank you.

I’ve been fuming furious ever since I found this post a few days ago; despite all my years of work on the 21 “aging out” policies, despite the fact that I brought national attention to the problem and forced the HHS secretary to notice, the government (state AND federal) are still allowing this unintended consequence of the EPSDT program to put even ventilator-dependent people and their families in a horrible, untenable positions where their lives will be torn apart at best, and lost to nursing home neglect at worst. For adults, it’s incredibly difficult to remain at home if you have a severe disability. As Dr. Ford Vox wrote in a recent piece in Salon: “…if your electric wheelchair breaks down or needs a new battery, we’ll have no problem moving you into a nursing home. You’d prefer a new battery so you can continue living at home? You picked the wrong state. As a poor Missourian, you’ll have no more than 30 days for your rehabilitation. Not quite ready to go home? Need a few more days of intensive therapy? Again, you picked the wrong state. Missouri Medicaid wants to admit you to a nursing home so much that it also doesn’t allow for outpatient physical therapy services or in-home therapies, taking another essential tool out of the hands of your medical team.”

We won CRPA, The ADA, Olmstead, and more, but our victories seem almost inversely proportional to the realities on the ground, as states slash services to the bone at the same time as the disabled population (uninsured or uninsurable) grows. The president announced his “Year of Community Living” as a mother in Illinois prepares to move her ventilator-dependent son away from his job and community and into an institution just because he’ll soon turn 21 and “age out” of what little services the feds require state Medicaid agencies provide to children.

The “out of sight, out of mind” mentality of our politicians makes me angry; the fact that so many advocates in the disability community, who should be fighting for our most vulnerable people, are every bit as unaware of the 21 cutoff infuriates me. The termination of Medicaid home care services at 21 is like this wormhole that’s continuing to suck innocent people in and lead them to institutionalization and/or death, and the fact that I’m (as far as I know) still the only activist noticing this and fighting back is intensely frustrating and disturbing. We’ve GOT to stop fiddling while Rome burns, and unite to end the worst injustices. And the ongoing FAILURE to rectify the 21 cutoff situation should certainly be at the top of that list.

Nick

The Pharaoh is now drafting his plan to reform America’s insane health care system, but has said that long-term care, which Medicaid is the number one provider of, will not be reformed in this package. How can they reform health care without addressing long-term care, one of the biggest expenses straining state budgets and bankrupting American families? It is bizarre that legislators and voters could ever see this as a separate issue, when it is one of the worst examples of how badly the system is broken. Institutions cost the most of any long-term care option, but are enshrined in law as mandatory, while home care services, the least expensive option, are slashed to the bone by states because they are “optional.” States are still forcing people with disabilities into institutions, the most costly option, because of the antiquated and discriminatory institutional bias in federal Medicaid law that both parties continue to choose to ignore.

The Democrats created the institutional bias when they drafted Medicaid law 44 years ago. Now, amidst their push to overhaul the system, they are ignoring calls from activists to rectify this injustice. On Tuesday, ADAPT activists, after months of letters and phone calls did not produce results, visited 25 Democratic offices around the country to demand that meetings be scheduled to hear their concerns, and that the Democrats apologize for 44 years of unjust policies that have stolen billions from taxpayers and stolen millions of productive lives from their communities. Here is a video clip of activists visiting Senator Baucus’ office in Missoula, MT and stating their case. Other activists were camped out at the DNC headquarters in Washington DC, keeping vigil until their demands are finally heard. 44 years is enough of this injustice; it’s time to change.

IT’S TIME.

We all owe ADAPT our support. They are putting themselves on the line, facing arrest, threats, getting carried out of the DNC by police, their accessible portable toilet was confiscated, but they’re still speaking up when no one else will, for those in nursing homes that are not being heard. Pharaoh, LET MY PEOPLE GO!

Go Down Moses – Louis Armstrong

Nick

Too Many Setbacks To Count

Videographer: Alejandra Ospina
Writer/Director/Editor: Nick Dupree

Music by The Eagles

Footage of The Count from this YouTube video

Finished video made with Corel VideoStudio by Nick Dupree

Full transcript of the video, with links and footnotes:

This is Nick Dupree for the Nick’s Crusade Blog. I’ve now been in the institution for over 8 months now. I came here because there’s a lot more services, a lot more programs here, and a lot more flexibility and opportunities for people with disabilities. But the problem is, we’ve found that even though there are more programs here, bureaucracy makes it hard to get to them. We’ve had so many setbacks that it would take The Count to count them.

“I am The Count. Do you know why they call me the Count? Because I love to count things.” [maniacal laughter] [The Count counts]

First of all, the hospital is not familiar with discharging ventilator patients, because if you’re on a ventilator, this place is a lot like the Hotel California – you check in and you never leave…

“Mirrors on the ceiling,
The pink champagne on ice
She said ‘we are all just prisoners here, of our own device’
In the master’s chambers,
They gathered for the feast
The stab it with their steely knives,
But they just can’t kill the beast

Last thing I remember, I was
Running for the door
I had to find the passage back
To the place I was before
‘relax,’ said the night man,
We are programmed to receive.
You can checkout any time you like,
But you can never leave!”
[guitar solo]

So, because they’re not familiar with the discharge process, it’s been hard for them here at the hospital to get together the paperwork so I can get nursing and go home and have home nursing to support me at home. So what’s happened is, they do it wrong, the Dept. of Health in Albany sends it back and says, no do it again, and then they send it again, and then they say, “no, something’s missing, you need to train the caregiver and document it again, you need to send the documents from the home visit…” so we’ve experienced setback after setback, and it’s costing the government over $1000 a day, but that doesn’t seem to motivate them to expedite this. Hey, it’s not their money, it’s yours!

When people with disabilities are not as able to advocate for themselves or be persistent, they end up stuck for years and years and years unnecessarily institutionalized and watching the world and the people around them enjoying life while they’re stuck in an nursing home. So we’ve had setback after setback, and this week, after we finally got all the paperwork figured out, the nursing agency flaked out on us, so now we have to get another nursing agency. And it’s setback after setback, enough setbacks that The Count would love to count them.

[maniacal laughter] [The Count counts] [maniacal laughter]

Sixth “Nick’s Crusade” Video Blog from Alejandra Ospina on Vimeo.

What Life In An Institution Is Really Like, And Why This Entire Model Should Be Replaced

Writer/Director: Nick Dupree
Cinematographer: Alejandra Ospina

Video put together in Corel VideoStudio by Nick Dupree

Full transcript of the video, with links and footnotes

This is Nick Dupree for the Nick’s Crusade blog. I’ve been in the institution almost 8 months now; you see the clock tickin’ away. It’s the large hospital ventilator¹, large and unnecessary, unlike the one at I had at home². Here you see the tangle of unnecessary double limb tubes³. And that’s me.

I’m doing this blog because I want people to know what an institution is really like, and why the model is broken and needs to be replaced.

Institutions are usually large and they cost a lot to keep open. Just the cost of electricity for a giant institution will blow your mind. And then you have to pay for all the food, all the staff, the administration, the financial people to handle all the billing… like a small army has to handle the billing. And then, with something so large, there’s not enough money to hire a lot of staff for the patient care, so institutions are always going to be understaffed. You’re always gonna have, you know, 3 or 4 staff to a unit of 20 people, or maybe 2 staff to 20 people. For the nursing home part of the facility here⁴, you have way less than that, and what happens is you come here as a patient, and what you soon find is that there are not enough staff to go around. The staff have to take care of other patients, so you’re gonna be alone in a room most of the time. And you just hope when you ring the call bell, somebody is close enough to the nurse’s station to actually hear it.

And it’s an environment where things get missed, because there’s not enough staff. The little things that get missed… the quality of life of the patient goes through the basement. You might not be able to eat when you want to eat, because there’s not enough staff. You have to eat when there’s staff there that can help you, and that might only be an hour a day, or whatever. So things get missed. And it’s not that the nurses and the aides are bad, that’s not true at all. I’ve met a lot of good, really good nurses here, really good aides. With very few exceptions, they’re good, but they just don’t have time.

Recently, you’ve read about abuse in institutions, and the solution that the state always comes up with is: let’s increase funding, let’s give more funding for oversight. And ultimately, that’s not going to fix the problem. It’d be like giving a new paint job to a car that has no wheels. The model itself is broken.

No matter how much money you pour into these institutions, it’s not going to fix the underlying problem, and that’s segregation. Institutions segregate people and keep them stuck with no family! And no friends, or friends that have to leave after the visiting hours, and the person is left alone, and that negatively affects their recovery.

For about 17 years, I had nurses in the home setting, one-on-one care⁵. And when you’re severely disabled, you can’t afford to be in an institution. Although it costs exponentially more than home care, if you’re severely disabled, you can’t afford to be in a nursing home. So the entire model has to go away from outdated nursing homes, and all that money has to go into community services, or the quality of life, and the health outcomes, with infections and everything else, are going to be terrible.

Changing the system is something that this country has to do.

Footnotes

1. The Puritan Bennett 760 ventilator
2. Seems really unnecessary after using the (comparatively) much smaller LP ventilators for 14 years.
3. Seems really unnecessary after using the (comparatively) much simpler single limb circuits on the LP vents for the past 14 years. Note how the tangle of double limb tubes makes it look like I’m being attacked by the Flying Spaghetti Monster.
4. The entirety of C Building and two floors of the A Building are dedicated to the nursing home. The rest of A building are hospital units. I am in a rehab hospital unit in the A Building.
5. I naturally compare my experiences here to my life with one-on-one nursing care back home in Alabama.

First, an example of abuse from my local area:

NEW CITY – Frank Zanghi says his blind, deaf son, who uses a wheelchair, was abused when he lived in a facility for the developmentally disabled in New Jersey years ago. His son’s front tooth was knocked out, his back was slashed and his penis required five stitches.

Now what happened to the monstrous place that subjected a deaf/blind child to such horrible physical and sexual abuse? The perpetrators were jailed? At the very least, was the institution involved shuttered, and the millions of taxpayer dollars supporting it moved elsewhere to non-abusive settings? Nope and no.

The father of the victim wants more funding for the types of places that so severely abused his son.

Zanghi says the abuse happened because of funding cuts to the facility. Now he’s worried that Gov. David Paterson’s proposed budget that reduces funding for the Office of Mental Retardation and Developmental Disabilities will take a severe toll on organizations like Jawonio, where his son, Joseph, has been receiving care for 15 years.

Source: The Journal News: Rockland advocates for developmentally disabled lobby for funding

Though Jawonio is not the same culprit in New Jersey that abused Joseph, NO institutions should be receiving financial rewards (increased funding) for the abuse and low quality of life they so often provide us. We should shut down institutions, and put that money into home care and small group homes integrated in our neighborhoods. We should make this transition all the faster when the recession is pressuring states to shed expensive and outdated programs like institutionalization (sadly, states have not been increasing home care to compensate as they close institutions).

Further, although funding cuts definitely hurt quality of life in institutions, increased funding often makes no difference in these hell holes. Last year, the state of Texas poured millions into its state institutions. The result? The night staff at Corpus Christi State School arranged human dogfights, threatening mentally disabled residents with jail unless they fought, and laughing at their terror and betting on the outcomes. ABC News recently brought national attention to this disgusting story (warning: contains disturbing violent videos).

In this disturbing image of the "fight club" at Corpus Christi State School, one resident chokes another, as staff snap pictures with their cell phones.

After seeing this debacle, merely the latest chapter in its long and infamous history of abuse, the state will obviously close the doors on this dangerous environment and move the residents somewhere safer, right? NO!! Texas’ solution? Putting an additional $112 million into their 13 gulags for the mentally disabled! Whenever they abuse people, these institutions get rewarded with more money! Incredibly, this $112 million dollar commitment was enough for federal prosecutors to back down on the numerous civil rights violations they had found, and settle the case. Closing down these places isn’t even on the table; all the thinking is deeply embedded “inside the box.”

“They’ve already dumped lots of money into the system and nothing has really improved,” said Beth Mitchell, Senior Managing Attorney of Advocacy Inc., an organization that works to protect the rights of Texans with disabilities. “It’s sad that we may end up spending a significant amount of money and not see a significant improvement to the system.”

Source: ABC News: After ‘Fight Club’ Scandal, Texas Will Pump Over $100M into Residences for Mentally Disabled

If we actually care about stopping abuse, we have to move to a new, community model.  Repainting and refurbishing a car with no wheels won’t get us anywhere.

Nick