Tag: Olmstead

Video: “Aging Out” of the health care needed to survive at 21 threatens future of two Florida college students

Posted by – April 5, 2013

The 21 cut-off, the policy that I fought hard to change in Alabama with a full campaign that I began two years before the cut-off would hit on my 21st birthday, and now I fight on this blog, is still a threat to many around the country. As people with severe disabilities are saved by technology and are increasingly able to grow up, greater and greater numbers of us will trip over the 21 cliff, “aging out” of the in-home care that we need for the most basic survival and dignity. It is a problem that too many state Medicaids essentially shove the people who need services and supports the most off the cliff as a 21st birthday present, and this continues to cause real harm.
We cannot allow states to undo the incredible progress people have made, with the help of life support technology, surviving to adulthood and thriving, adding our talents and contributions to our families, communities, states, and country. It is not the will of the American people that states pull the rug out from under the most vulnerable just because they’ve turned 21, but too many states have been doing exactly that for far too long; I’m continually haunted that, in Alabama, not all my friends survived it.

This video, featuring Sarah, and Jordan of the 21 disabled campaign, two college students grappling with the consequences or future consequences of the 21 cut-off and other hardships foisted on them by short-sighted Medicaid bureaucrats, will wake you up to the continuing crisis that aging out at 21 is right now, in 2013.

In this video ^ Jordan mentioned her first 21 disabled video: you can see that original 21 disabled video here that went viral and really made a difference, pressing Florida Medicaid into giving Jordan a reprieve until graduation.
I really admire how Jordan, with so little time remaining on the clock—just a few months—when she found out the 21 cut-off existed and found herself barreling toward the 21 cliff, was able to fight back effectively and win. A big part of her success was her savvy with social media, maximizing Facebook, Twitter and WordPress to get her YouTube video in front of 30,000 people in a matter of days. Neither YouTube, Facebook, Twitter or WordPress existed during “Nick’s Crusade” (March 2001-February 2003) but now that these social media tools ARE available, I hope me + the disability community writ large can leverage them effectively enough to make the bulk of internet users aware of the 21 cut-off, and then build the support necessary to end “aging out” of in-home care in all 50 states!

Sarah, who talks about her experiences first in the newest video, has no reprieve from the 21 cut-off on the horizon. She describes a situation of fighting tooth and nail to get services, waiting until age 18 to finally get some desperately needed services and supports so she could live out her college dreams, then upon arrival at the university dorms was told she would have to go home, for the excuse I’ve seen used again and again to oppress and exclude us, “liability reasons.” Sarah didn’t leave and didn’t give up, and that alone shows more fortitude than most could fathom. And now she is looking ahead at the 21 cliff, facing the prospect of the life-sustaining hands-on care that makes college possible for her going away after her 21st birthday.

Such a system as Florida has, that allows you just three years of the care you need to survive—from age 18 to 21—then pulls the rug out from under you mid-semester, is a uniquely cruel system. In fact, there is little else in American life THIS openly cruel in its impact on people with disabilities and their families, and, in my travels, I’ve not seen any other policy that poses as clear a clear and present danger to people with severe disabilities as this 21 cut-off policy does, which is why I’ll never shut up about it. Help me. Don’t let me be the only voice out there on this issue of “aging out” of life-sustaining services and supports! Given the intransigence of Florida Medicaid and the intractable nature of the Florida legislature when it comes to social programs, we will need all hands on deck to gain meaningful change for Sarah!

Awareness of this issue MUST go on the front burner. It is a nationwide problem: Raul Carranza in California, who is on a vent 24/7 like me, was forced out of college at ACLU for his 21st birthday when he no longer qualified as “pediatric” and the state became stingy (go to Raul’s web site for the full story, which is more complex than other cases, but has a very similar root cause).

Let’s do something.

IDEA 1: consider helping me with BLOGSWARM FOR SARAH: End the age 21 cut-off!. If I can get Sarah’s permission, I’d create a hub here on www.nickscrusade.org for a mass movement of blogging about preventing the dream-destroying 21 cut-off from harming Sarah and others, with everyone posting on their blogs on the issue, expressing their unique thoughts, views and ideas, and linking back to the central hub, as was done with past ADAPT Blogswarms and Blogging Against Disablism Day (BADD).
Interested bloggers, please contact me via email at nick @ nickscrusade.org or on Twitter @NickDupree or on Facebook at Nick Dupree

IDEA 2: This goes hand-in-hand with the preceding idea; just MAKE JORDAN AND SARAH’S NEW VIDEO GO VIRAL! Put the video, embedded above, or this nickscrusade.org post with the video in it in front of as many people as possible; Facebook it, tweet it, re-tweet it, email it, reddit it, SHARE IT far and wide! Whether you blog about the video or not, SPREAD IT!

We live in interesting times. Now more than ever, survivors can get involved online and share their stories with the world. It’s an amazing thing that those of us who breathe and/or move with the help of technology can now use other, Internet-based technologies to participate in the world, make our unheard voices heard, give the megaphone of the blogosphere to the unrepresented, make public the pain and oppression that has always been hidden away… but to really be heard over the social media noise, to really maximize online tools and make a difference, WE NEED YOUR HELP! You, the person reading this right now.

With hope,

Nick

The Social vs. Medical Model of Disability, Communities Will Be Forced To Choose

Posted by – April 7, 2011

You may or may not know about the medical model and the social model of disability.

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

Feds Fiddling While State Medicaid Programs BURN

Posted by – May 21, 2010

Question: In light of Obama’s plan to expand Medicaid eligibility, is anyone in Congress noticing the MASSIVE state budget cuts to Medicaid across the country and ruminating about how that jives with this impending expansion? I fear that if states have to raise income eligibility and bring millions of uninsured onto the Medicaid rolls, that will mean even deeper cuts in “optional” home care programs to pay for the expansion, and even more people with disabilities’ dreams shattered.

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

ADAPT Blogswarm, Fall Action 2009

Posted by – October 14, 2009

The ‘swarm has arrived! Bloggers across the globe have united to shine a light on rampant unjust institutionalization and segregation of people with disabilities and ADAPTs Fall Action in Atlanta confronting it!

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!

Blog To End Unjust Institutionalization!

Posted by – October 5, 2009

ADAPT is going back to the heart of the civil rights movement, Atlanta, to demand that the promises made to Georgians (and all Americans) by the Supreme Court in Olmstead v. L.C. and E.W. are kept. Read ADAPT’s page on the action here.

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

Disabled Still Forced Into Institutions Just For Turning 21: Open Letter To The Disability Community, August 2009

Posted by – August 2, 2009

Obama Administration Signs the CRPD Treaty, But Is In Flagrant Violation Of It, The ADA, Olmstead, and Its Own “Year of Community Living” PR Campaign, As Arbitrary Termination of Medicaid Home Care Services at Age 21 Continues Unabated

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

Fourth “Nick’s Crusade” Video Blog: ObamaFail! Administration Refuses To Lead On Disability Desegregation

Posted by – May 7, 2009



Transcription (as captioned in the video):

Hello, this is Nick Dupree for the for the Nick’s Crusade blog. This is my fourth video blog, and today is the 252nd day that I’ve been in an institution because I can’t get access to community services. And it seems that the Obama administration is not going to help us fix this problem — the problem of the institutional bias, where if you need services, they’re not readily available in the community so, so many people end up in expensive institutions, and it’s a lot worse for them, lowers their quality of life, and ends up costing exponentially more. I know in Alabama, it costs a quarter of a million dollars to keep someone in an institution, and it cost $70,000 to give them 24/7 home care. It’s a very stupid financial decision that the government keeps making, and despite all the activism and the years of court decisions that are on our side, we’re still not getting change we can believe in, as Obama says.

It’s even more disturbing, because during the campaign, Obama promised us that he would support the Community Choice Act, which would let people have a choice to live in the community, versus being forced to go into a nursing home, as that’s all the government will pay for.

He promised he’d support the Community Choice Act during the campaign, but yesterday we discovered that the Community Choice Act has been removed from the White House website. The White House website had the Community Choice Act featured on their Disability web page, and now it’s gone. They erased us. They erased what we really needed, and that’s despicable. And now, they’re going forward with health reform initiatives, without addressing long-term care. They’re going to reform health care without addressing one of the largest expenses of health care, which is long-term care. They say “we don’t have time”. With this kind of expense, how can we afford to wait? How can we afford, morally, to segregate part of our population, and keep them trapped in nursing homes with no choice? It’s not moral.

I advise you to go to the website of the President’s health reform initiative, HealthReform.gov. There’s no mention of long-term care, not a word whatsoever. There’s no mention of nursing homes, there’s no mention of home care, and there’s definitely no mention of the Community Choice Act. Go to HealthReform.gov and see for yourself. We’re not included, and our segregation is continuing unabated. Nobody notices us. That’s something that really has to change.

Second “Nick’s Crusade” Video Blog: ADAPT Action and the Olmstead Decision

Posted by – April 29, 2009

Transcription (as captioned):

This is Nick, of Nick’s Crusade blog. This is day 243 of me being in an institution in this lovely blue hospital gown. Right now, ADAPT activists are protesting in Washington, DC to end unnecessary institutionalization, like I’m experiencing, and making care available in the community.

10 years ago, there was a lawsuit that went to the Supreme Court about two women, Lois and Elaine, who, for no apparent reason, just because they had mild disabilities, were stuck an institution in Georgia. The Supreme Court ruled 10 years ago that under the Americans with Disabilities Act, unnecessarily institutionalizing people is illegal, and that we deserve, and have a right to, our services in the most integrated setting. So this case, this Olmstead decision, got Lois and Elaine out of the institution. And right now, Lois is protesting in Washington with ADAPT.

With millions of people still in institutions, when they don’t need to be, the promise of Olmstead has been a lie. The states have not implemented Olmstead, and it’s ridiculous. It’s time for a change.

Yesterday, the ADAPT activists met with the president’s health-care “czar,” and this “czar” said that they don’t have time to change institutional bias in their health care reform package this year. In response, ADAPT activists chained themselves to the White House fence, and 91 of them got arrested.

We have to fight back. It’s time to fight back against administrations that don’t keep their promises, against states that break the promises.

It’s time to fight back, time to support ADAPT, it’s time for the Community Choice Act – NOW!

Nick

Justice delayed is justice denied. Implement the Olmstead decision, include the CCA in health care reform NOW!

Money Following The Person Out Of Institutions "Not Feasible," Says Alabama Medicaid

Posted by – October 4, 2006

Money Following The Person Out Of Institutions “Not Feasible,” Says Alabama Medicaid

They Still Won’t Give An Inch To Free Citizens From Nursing Homes

I just watched the Alabama Medicaid commissioner Carol Herrmann spinning and tap-dancing around the Money Follows the Person grant issue on the For The Record show. Alabama Medicaid continues to stick by its decision to refuse to accept federal money for home care. On the show debating Herrmann, Montgomery Independent Living Center director Scott Renner pointed out that CMS surveys have 3,000 Alabamians on record as wanting out of nursing homes. He said if they were to move 1% of current residents out, they would save around $7 million.

But Alabama Medicaid will do anything to avoid slighting the nursing home lobby, do anything to avoid changing their long-term care budget (about 2/3 of which goes to institutional care), do anything to avoid additional expenditures, regardless of what kind of care their consumers want.
It was so disheartening to see Commissioner Herrmann spinning that she is really on the same page with the disability community while on the other hand quietly make ridiculous excuses for refusing this money, like, “our patients will be getting very old and just have to go back into the nursing home,” and “yes, we have a general fund surplus, but other departments need the money more.” AGH!!!

The fact is, Alabama Medicaid does not want to change their antiquated and oppressive system. We have so many already on waiting lists to get out of institutions and into community services, yet Alabama is refusing more funding to meet their needs! The outcry will only grow as our elderly population doubles in the coming years. But Alabama Medicaid won’t give an inch!

The deadline for applying for this grant is November 1st. Alabama Medicaid has dug in their heels. They won’t be applying.

The fact is, we have lost again. It’s only status quo or downhill from here for services in this state, folks.

I feel so much hopelessness and despair.

Nick

Filed Under:
Health care and Disability Rights

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