Category: Health care and Disability Rights

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!

ADAPT Blogswarm, Fall Action 2009 Participants!

Posted by – October 8, 2009

I’ve been excited by the response to my call to blog to end institutionalization around the Fall National Action!

I’m honored to announce the following blogs will be participating:

PhilosopherCrip
Announcement post

The Roving Activist’s Blog
Intro

Crippled Under The Law

NZ Accessibility

The Center for Disability Rights

Sanabitur Anima Mea

Today.com’s Official Disability Rights Blog

Composite: thoughts on poetics & tech and Hack Ability

LTC Reform

Empowering People Changing Lives

If you’re not yet listed as a participant and would like to be, please comment below. We need all the help we can get.

FREE OUR PEOPLE!!

Nick

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

It’s MDA Telethon Time Again!!

Posted by – September 8, 2009

The MDA’s 44th annual Labor Day Telethon was on the TV. Since my family and I were on the local (Mobile, AL) MD Telethon several times, and my mom served a year as Mobile MDA’s president, I thought I should comment.

Many activists attack the MDA for fundraising based on pity. It’s true that their 1950s attitudes about disability can be really grating; the Telethon is decidedly stuck in the past, both in how they see us and their entertainment–it’s always had the kind of acts you would expect to see on The Tonight Show with Johnny Carson; this year’s guests included Tony Orlando, the new Menudo (sans Ricky Martin) and Charo. But what sticks in my craw isn’t that as much as the misleading nature of the Telethon.

That ridiculous caricature of Jerry Lewis, used as a Telethon logo for decades

That ridiculous caricature of Jerry Lewis, used as a Telethon logo for decades

Every year the Telethon gives the impression that the MDA provides significant help for the daily lives of the MD-diagnosed people they’re showing on TV, and most people (even legislators) believe this. But the MDA does not focus on assisting us on the ground, and this is my main beef with them. When I was sick and at death’s door and really needed help, they wouldn’t lift a finger. Chris Wiggins was my oldest friend, and AN MDA POSTER CHILD, and, unfortunately, like so many others in his situation, Medicaid arbitrarily stripped him of the nursing care at age 21. This ultimately led to his death. Despite the fact that Chris and his photo on posters, along with years of tireless work by he and his mom at fundraisers, probably kept the local branch open, when they really needed help, MDA declined. They wouldn’t even help raise awareness of the problem of inadequate home care for “Jerry’s Kids” over 21. Chris, and too many of his compatriots with DMD, died from lack of assistance in the community, of government neglect, not from muscular dystrophy. MDA doesn’t mention that; they focus on research. Many parents with children affected by MD work feverishly to fundraise for the MDA, thinking that when their children inevitably become badly disabled that money they helped raise will assist them in their hour of need. They’re being cruelly misled. MDA doesn’t do that; they focus on research.

Let’s look at some of the misleading claims from this year’s Telethon (from MDA.org):

Telethon claim: MDA provides flu shots to people with MD. “For only $30, you can provide a flu shot for Jerry’s Kids!”.
The truth: Just because national MDA authorizes local branches to cover flu shots, doesn’t mean all do. From what I’ve heard, one guy gets flu shots at an MDA clinic in California, but they aren’t available from Boston MDA. And I don’t know if the reborn Mobile, AL MDA does this, but I never saw the old Mobile MDA offer flu shots (prior to them getting shut down for fraud/embezzlement in 1993).

Telethon claim: MDA provides occupational therapy, physical therapy, and respiratory therapy consultations to people with MD.
The truth: I’m sure some clinics provide this, but I’ve never actually seen it or heard about people receiving this. And remember that if you don’t live near a clinic, you can’t access this, or any MDA services for that matter.

Telethon claim: Thanks to your generous donations all kids with MD can go to MDA summer camp, with no charge to the families!.
The truth: My mom was charged $500 per child. People aren’t barred from camp due to inability to pay, but many local branches directly contradict Telethon promises and bill parents.

Telethon claim: MDA provides wheelchairs for people with MD. On the Telethon, you see shiny new wheelchairs in a row, and all these happy people who got wheelchairs.
The truth: Even for young children they provide little of what is on the Telethon. They will pay up to $2000 toward the purchase of a wheelchair (only if Medicaid and/or private insurance won’t cover all of it) and these days $2k will cover about one tire on a powerchair. And even that small assistance is exceedingly difficult to get. So, needless to say, very few of us get wheelchairs from the MDA. In this annual report on the MDA web site, they brag about giving out the $2k equipment payment (for wheelchairs, crutches, braces, etc.) to 4,200 people in 2008. Think about that. Out of all the millions of MD patients in the U.S., only 4,200 got equipment help last year. There are probably 4000 people with muscular dystrophy in Alabama and Georgia alone who need chairs! The facts on the ground make MDA CEO Bob Ross’ claim that “millions depend on the MDA for their very survival” more than a bit dubious (Ross, who gets $500,000 a year salary from the MDA, “depends” on them way more than most MD patients!)

Jerry Lewis in front of the tote board at the 2007 Telethon

Jerry Lewis in front of the tote board at the 2007 Telethon

The truth is that most of MDA’s efforts aren’t immediately seen by its consumers, as their focus is research to find a cure, laboratory work that we may or may not benefit from decades down the line. The lion’s share of the roughly $1.5 billion the Telethon has raised since its inception has been put toward research, and they’ve become the largest non-governmental sponsor of muscular dystrophy research in the world.

Right now we are in a situation where the public thinks the MDA is covering much more than they actually are, and that can sometimes even complicate efforts to get public sector assistance. When I was in Montgomery arguing against Medicaid’s 21-cutoff, a state senator said, “doesn’t the MDA cover that?” He was baffled and incredulous when told no.

The MDA could change its misleading ways by a) changing their policies and widely providing the goods and services advertised on the Telethon. OR b) stop misleading the audience that they are providing goods and services to us. Just come out and say, “we mainly do research, here are some research projects we are doing.” They could interview researchers and do a lot with the truth. I think it’d be cool to learn about MDA-funded scientific breakthroughs and what they mean. Show us illustrations of how dystrophin works, a diagram of a mitochondrion! Be honest and you’ll go far.

I wouldn’t mind the Telethon as much if they practiced what they preach or preached what they actually practiced. I want the MDA to reform, but I’m not holding my breath.

Nick

Related Bloggery:
Scott Sands Alive: Begging For Charity
Danny Kodmur’s story of the UCP Telethon, and how it improved

A Year In An Institution

Posted by – August 29, 2009

How many months have I been institutionalized?

The number of the day

August 28 marked a full year I’ve been in a NYC rehab hospital. It was a bittersweet anniversary: sweet because it’s one year since I succeeded in changing my life and moving close to my girl, and bitter because of the myriad of professionals that have failed to coordinate the home services required for me to transition to our apartment, confining me to the institution for over a year.

Hopefully I won’t make it past 13 months of institutionalization.

Nick

Fix The Broken Foundation Before Building A Skyscraper On Top Of It

Posted by – August 22, 2009

My biggest beef with Health Care Reform right now is that we’re building a new tower on top of a broken foundation. Medicare and Medicaid are badly broken, and we’re building more programs on top of that. Bad idea.

Insurance company bureaucracy is even worse, but federal programs have to be significantly better in the future for there to be meaningful competition. Right now, the government health care system is still far too fail. Medicaid is deeply corrupt, admitting people to nursing homes because institution owners and their lobbyists line the pockets of state legislators; people are even stripped of home care just for turning 21, and forced into institutions. As far as Medicare goes, its fee schedule encourages procedures over responsible diagnosis and management, causing the death of primary care and creating a costly and disastrous situation for patients. An old man will have no problem finding a cardiologist to do an angioplasty, but may find it near-impossible to find a primary care specialist who can manage him with meds instead.  A crude example, but it speaks to how costs can explode when so few primary care docs are around and it’s mostly proceduralists who have survived the extinction. Most new doctors the past few decades have stayed away from family practice because Medicare’s the AMA’s drastic undervaluing of the E&M (evaluation and management) reimbursement codes make it difficult to survive financially as primary care physicians. You get what you pay for, and Medicare (and the private insurance industry that follows Medicare’s lead) pays for procedures, procedures, procedures, NOT talking to patients and thinking about what’s best for us. According to Medicare, taking a detailed history from a patient is worth nothing more than something like the first 27 seconds of a proctoscopy; I rarely see doctors taking detailed histories anymore, outside of residents in university hospitals who are ordered to do so. Do plenty of docs have to do more and more procedures just to stay afloat and keep their doors open? YES!!

Aside from a fee schedule that has buried primary care and incentivized unnecessary procedures, Medicare has also become such an unwieldy bureaucracy that even the most basic functions are drowning in red tape.

Read this personal experience from primary care specialist Dr. Toni Brayer:

Dear President Obama,
I am in favor of Health Care Reform and I agree with you that universal coverage and eliminating the abuses that both patients and doctors have suffered at the whim of the for-profit insurance industry must be curtailed.

But I also want you to fix Medicare. Medicare is so bureaucratic that expanding it in its current form would be the death knell for primary care physicians and many community hospitals. The arcane methods of reimbursement, the ever expanding diagnosis codes, the excessive documentation rules and the poor payment to “cognitive, diagnosing, talking” physicians makes the idea of expansion untenable.

May I give you one small example, Mr. President? I moved my medical office in April. Six weeks before the move I notified Medicare of my pending change of address and filled out 22 pages of forms. Yes, Mr. Commander in Chief…22 pages for a change of address. It is now mid-August and I still do not have the “approval” for my address change.

I continue to care for my Medicare patients and they are a handful. Older folks have quite a number of medical issues, you see, and sometimes it takes 1/2 hour just to go over their medications and try to understand how their condition has changed. That is before I even begin to examine them and explain tests, treatment and coordinate their care. Despite the fact that I care for these patients, according the Medicare rules, I cannot submit a bill to Medicare because they have not approved my change of office address.

I have spent countless hours on the phone with Medicare and have sent additional documentation that they requested. I send the forms and information “overnight, registered” because a documented trail is needed to avoid having to start over at the beginning again and again. I was even required to send a signature from my “bank officer” and a utility bill from the office. Mr President, I don’t have a close relationship with a bank officer so this required a bank visit and took time away from caring for patients…but I certainly did comply.

I am still waiting to hear from Medicare. At my last call they said they had not received yet another document, but when I gave them the post office tracking number, they said it was received after all. They could not tell me when or if they will accept my address change.

I have bills stacking up since April and I just found out that they will not accept them if they are over 30 days old. I have cared for patients for 5 months and will not receive any reimbursement from Medicare. The rules state I cannot bill the patient or their supplemental Medicare insurance either.

Believe me, Mr. President, I commend you for taking on such a huge task. Please also know that Medicare reform is needed along with health care reform.

A loyal American,
Internal Medicine (aka: primary care) physician

Source: EverythingHealth: Fix Medicare

It seems like the government doesn’t want doctors participating in Medicare, and makes the reimbursements so low and the hassles so high (they can’t even manage a simple change of address without a half-year bureaucratic nightmare) that more and more providers just give up. Yes, this is yet another case of the government’s unfortunate cranial-rectal inversion.

Dr. IcedLatte lists more aspects of modern medicine that desperately need to change here.

The Tower of Babel

The Tower of Babel

I support a public option in the new health care reform package, but (unlike some conservatives) I realize we already have several widely-used public options, Medicare and Medicaid, that the government runs, and should fix as a core part of health reform. If a new government program just continues the failures of Medicare and Medicaid, that’s not reform. We have to include the CCA in the bill, include a wider adoption of the PROMETHEUS bundled payment system (PROMETHEUS stands for Provider payment Reforms, Outcomes, Margins, Evidence, Transparency, Hassle-reduction, Excellence, Understandability, Sustainability) so that the government’s skewed, guaranteed-to-fail fee for service billing system doesn’t bankrupt Medicare. Don’t build a tower of babel that’s just going to fall. Listen to all the experts, doctors and patient advocates, and FIX MEDICARE AND MEDICAID. I agree (mostly) with this article by David Ignatius, focus on health system reform, not just “health insurance.” We have to fix the foundation or the new skyscraper is going to collapse.

Nick

Is The U.S. The World Leader In Disability Rights?

Posted by – August 7, 2009

So, the U.S. has now signed on to the historic UN Convention on the Rights of People with Disabilities (CRPD). People are saying this is wonderful, the ACLU is saying that it marks America’s return as a world human rights leader (by the way, the Senate has yet to ratify the treaty). I’m concerned that this is largely happy talk, just more lip service while meanwhile we’re badly behind in enforcing the Rehab Act, the ADA, Olmstead, and the other disability rights legislation we’ve fought so hard for. Will the CRPA become yet another unenforced law on top of that growing pile? Particularly grating to me was this commentary on AAPD’s Justice For All blog, which closes with this:

The US can engage in meaningful partnerships across sectors and help developing nations with the construction of accessible infrastructure, expanding inclusive education and vocational training opportunities. By signing the Convention the US is dedicated to these efforts. Can we make a different, “Yes We Can!”

Wut?? The U.S. is going to be like the Peace Corps for accessibility of the third-world’s infrastructure or some $#!T?! PLEASE!! We can’t even implement our own disability rights laws! As we speak, the feds are moving against ENTIRE TOWNS that are inaccessible and violating the ADA! Don’t send the Accessibility Corps to Africa or India; first send them to renovate the Mobile Public Schools! First send them to Ann St. in Lower Manhattan, where most of the businesses are inaccessible, and all over the five boroughs, where inaccessible pre-war buildings seem to be the rule, not the exception. Where’s the US’ “meaningful partnerships across sectors” to address this inaccessible McDonald’s on 429 7th Ave. off W 34th, which is a major tourist area?

Picture of some serious McFail in accessibility.  Alejandra provides us an important public service by documenting the many accessibility fails of NYC

Picture of some serious McFail in accessibility. Alejandra provides us an important public service by documenting the many accessibility fails of NYC

We weren’t looking for some McDs yesterday, we were searching for pizza. The Spinelli’s pizza next door was accessible. When a locally-owned pizzeria tops a mega-giant multi-national chain in basic accessibility, that gigantic corporation needs to do some rethinking. As a special double bird to the elderly and disabled, this particular McDonald’s location has accessible entrances on either side of the stairs…that only open from the INSIDE, and only lead to stairs for the basement, staff confirmed. That leaves the middle stairs as the only access point for this location. Well done 7th Ave. McDonald’s, that’s some top-notch FAIL!

The U.S. has a lot of changes to make before we are a disability rights leader, an example to follow.

Any idea of when I’ll be able to access currently INACCESSIBLE public businesses? Maybe for the ADA’s 29th anniversary? 39th? Dammit, where’s the enforcement? We have no room to finger-wag and advise other countries about disability rights!

Nick

Eleven Months In An Institution

Posted by – August 2, 2009

July 28 marked my 11th month in a NYC rehab hospital.

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

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

NYC’s 19th Anniversary of the Americans with Disabilities Act (ADA) Event

Posted by – August 2, 2009

Nadina LaSpina (NYC ADAPT) gives a powerful, stirring speech about how far disability rights has yet to go, and Elaine Kolb sings an insightful song about the medical-institutional complex at the 19th ADA Anniversary Event in Central Park, July 26, 2009.

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