AT LEAST 40 VETERANS DIED ON VA HOSPITALS SECRET WAITING LIST

By Scott Bronstein and Drew Griffin, CNN Investigations | April 24, 2013

(CNN) -- At least 40 U.S. veterans died waiting for appointments at the Phoenix Veterans Affairs Health Care system, many of whom were placed on a secret waiting list.

The secret list was part of an elaborate scheme designed by Veterans Affairs managers in Phoenix who were trying to hide that 1,400 to 1,600 sick veterans were forced to wait months to see a doctor, according to a recently retired top VA doctor and several high-level sources.

For six months, CNN has been reporting on extended delays in health care appointments suffered by veterans across the country and who died while waiting for appointments and care. But the new revelations about the Phoenix VA are perhaps the most disturbing and striking to come to light thus far.

Internal e-mails obtained by CNN show that top management at the VA hospital in Arizona knew about the practice and even defended it.

Dr. Sam Foote just retired after spending 24 years with the VA system in Phoenix. The veteran doctor told CNN in an exclusive interview that the Phoenix VA works off two lists for patient appointments:

There's an "official" list that's shared with officials in Washington and shows the VA has been providing timely appointments, which Foote calls a sham list. And then there's the real list that's hidden from outsiders, where wait times can last more than a year.

Veterans dying waiting for healthcare

Are we fulfilling our promise to veterans?

Deliberate scheme, shredded evidence

"The scheme was deliberately put in place to avoid the VA's own internal rules," said Foote in Phoenix. "They developed the secret waiting list," said Foote, a respected local physician.

The VA requires its hospitals to provide care to patients in a timely manner, typically within 14 to 30 days, Foote said.

According to Foote, the elaborate scheme in Phoenix involved shredding evidence to hide the long list of veterans waiting for appointments and care. Officials at the VA, Foote says, instructed their staff to not actually make doctor's appointments for veterans within the computer system.

Instead, Foote says, when a veteran comes in seeking an appointment, "they enter information into the computer and do a screen capture hard copy printout. They then do not save what was put into the computer so there's no record that you were ever here," he said.

According to Foote, the information was gathered on the secret electronic list and then the information that would show when veterans first began waiting for an appointment was actually destroyed.

"That hard copy, if you will, that has the patient demographic information is then taken and placed onto a secret electronic waiting list, and then the data that is on that paper is shredded," Foote said.

"So the only record that you have ever been there requesting care was on that secret list," he said. "And they wouldn't take you off that secret list until you had an appointment time that was less than 14 days so it would give the appearance that they were improving greatly the waiting times, when in fact they were not."

I feel very sorry for the people who work at the Phoenix VA. They all wish they could leave 'cause they know what they're doing is wrong.
Dr. Sam Foote

Foote estimates right now the number of veterans waiting on the "secret list" to see a primary care physician is somewhere between 1,400 and 1,600.

Doctor: It's a 'frustrated' staff

"I feel very sorry for the people who work at the Phoenix VA," said Foote. "They're all frustrated. They're all upset. They all wish they could leave 'cause they know what they're doing is wrong.

"But they have families, they have mortgages and if they speak out or say anything to anybody about it, they will be fired and they know that."

Several other high-level VA staff confirmed Foote's description to CNN and confirmed this is exactly how the secret list works in Phoenix.

Foote says the Phoenix wait times reported back to Washington were entirely fictitious. "So then when they did that, they would report to Washington, 'Oh yeah. We're makin' our appointments within -- within 10 days, within the 14-day frame,' when in reality it had been six, nine, in some cases 21 months," he said.

November: A dire situation in South Carolina

Thomas Breen was so proud of his time in the Navy that he wanted to be treated only at a VA facility, his family says.

In the case of 71-year-old Navy veteran Thomas Breen, the wait on the secret list ended much sooner.

"We had noticed that he started to have bleeding in his urine," said Teddy Barnes-Breen, his son. "So I was like, 'Listen, we gotta get you to the doctor.' "

Teddy says his Brooklyn-raised father was so proud of his military service that he would go nowhere but the VA for treatment. On September 28, 2013, with blood in his urine and a history of cancer, Teddy and his wife, Sally, rushed his father to the Phoenix VA emergency room, where he was examined and sent home to wait.

"They wrote on his chart that it was urgent," said Sally, her father-in-law's main caretaker. The family has obtained the chart from the VA that clearly states the "urgency" as "one week" for Breen to see a primary care doctor or at least a urologist, for the concerns about the blood in the urine.

"And they sent him home," says Teddy, incredulously.

Sally and Teddy say Thomas Breen was given an appointment with a rheumatologist to look at his prosthetic leg but was given no appointment for the main reason he went in.

The Breens wait ... and wait ... and wait ...

No one called from the VA with a primary care appointment. Sally says she and her father-in-law called "numerous times" in an effort to try to get an urgent appointment for him. She says the response they got was less than helpful.

"Well, you know, we have other patients that are critical as well," Sally says she was told. "It's a seven-month waiting list. And you're gonna have to have patience."

Sally says she kept calling, day after day, from late September to October. She kept up the calls through November. But then she no longer had reason to call.

Thomas Breen died on November 30. The death certificate shows that he died from Stage 4 bladder cancer. Months after the initial visit, Sally says she finally did get a call.

"They called me December 6. He's dead already."

Sally says the VA official told her, "We finally have that appointment. We have a primary for him.' I said, 'Really, you're a little too late, sweetheart.' "

At the end is when he suffered. He screamed. He cried.
Sally Brenn on the death of her father-in-law

Sally says her father-in-law realized toward the end he was not getting the care he needed.

"At the end is when he suffered. He screamed. He cried. And that's somethin' I'd never seen him do before, was cry. Never. Never. He cried in the kitchen right here. 'Don't let me die.' "

Teddy added his father said: "Why is this happening to me? Why won't anybody help me?"

Teddy added: "They didn't do the right thing." Sally said: "No. They neglected Pop."

First hidden -- and then removed

Foote says Breen is a perfect example of a veteran who needed an urgent appointment with a primary doctor and who was instead put on the secret waiting list -- where he remained hidden.

Foote adds that when veterans waiting on the secret list die, they are simply removed.

"They could just remove you from that list, and there's no record that you ever came to the VA and presented for care. ... It's pretty sad."

Foote said that the number of dead veterans who died waiting for care is at least 40.

"That's correct. The number's actually higher. ... I would say that 40, there's more than that that I know of, but 40's probably a good number."

CNN has obtained e-mails from July 2013 showing that top management, including Phoenix VA Director Sharon Helman, was well-aware about the actual wait times, knew about the electronic off-the-books list and even defended its use to her staff.

I think it's unfair to call any of this a success when Veterans are waiting 6 weeks on an electronic waiting list
From 2013 Phoenix VA e-mail obtained by CNN

In one internal Phoenix VA e-mail dated July 3, 2013, one staffer raised concerns about the secret electronic list and raised alarms that Phoenix VA officials were praising its use.

"I have to say, I think it's unfair to call any of this a success when Veterans are waiting 6 weeks on an electronic waiting list before they're called to schedule their first PCP (primary care physician) appointment," the e-mail states. "Sure, when their appointment is created, it can be 14 days out, but we're making them wait 6-20 weeks to create that appointment."

The e-mail adds pointedly: "That is unethical and a disservice to our Veterans."

Last year and earlier this year, Foote also sent letters to officials at the VA Office of the Inspector General with details about the secret electronic waiting list and about the large number of veterans who died waiting for care, many hidden on the secret list. Foote and several other sources inside the Phoenix VA confirmed to CNN that IG inspectors have interviewed them about the allegations.

VA: 'It is disheartening to hear allegations'

CNN has made numerous requests to Helman and her staff for an interview about the secret list, the e-mails showing she was aware of it and the allegations of the 40 veterans who died waiting on the list, to no avail.

But CNN was sent a statement from VA officials in Texas, quoting Helman.

"It is disheartening to hear allegations about Veterans care being compromised," the statement from Helman reads, "and we are open to any collaborative discussion that assists in our goal to continually improve patient care."

Just before deadline Wednesday, the VA sent an additional comment to CNN.

It stated, in part: "We have conducted robust internal reviews since these allegations surfaced and welcome the results from the Office of Inspector General's review. We take these allegations seriously."

Read the full statement here

The VA statement to CNN added: "To ensure new Veterans waiting for appointments are managed appropriately, we maintain an Electronic Wait List (EWL) in accordance with the national VHA Scheduling Directive. The ability of new and established patients to get more timely care has showed significant improvement in the last two years which is attributable to increased budget, staffing, efficiency and infrastructure."

Foote says Helman's response in the first statement is stunning, explaining the entire secret list and the reason for its existence was planned and created by top management at the Phoenix VA, specifically to avoid detection of the long wait times by veterans there.

"This was a plan that involved the Pentad, which includes the director, the associate director, the assistant director, the chief of nursing, along with the medical chief of staff -- in collaboration with the chief of H.A.S."

Washington is paying attention

The Phoenix VA's "off the books" waiting list has now gotten the attention of the U.S. House Veterans Affairs Committee in Washington, whose chairman has been investigating delays in care at veterans hospitals across the country.

According to Rep. Jeff Miller, chairman of the House Committee on Veterans' Affairs, what was happening in Phoenix is even worse than veterans dying while waiting for care.

Even as CNN was working to report this story, the Florida Republican demanded the VA preserve all records in anticipation of a congressional investigation.

In a hearing on April 9, Miller learned even the undersecretary of health for the VA wasn't being told the truth about the secret list:

"It appears as though there could be as many as 40 veterans whose deaths could be related to delays in care. Were you made aware of these unofficial lists in any part of your look back?" asked Miller.

"Mr. Chairman, I was not," replied Dr. Thomas Lynch, assistant deputy undersecretary, Veterans Health Administration.

Congress has now ordered all records in Phoenix, secret or not, be preserved.

That would include the record of a 71-year-old Navy veteran named Thomas Breen.

http://www.cnn.com/2014/04/23/health/veterans-dying-health-care-delays/

Mother arrested over the deaths of her three disabled children at their home in England

------------------------------------------
London Evening Standard
April 23, 2014
reporters:
BENEDICT MOORE-BRIDGER 
JOHN DUNNE 
JOSH PETTITT 
BEN MORGAN 
JUSTIN DAVENPORT 

A woman has been arrested over the deaths of her three severely disabled young children at their home in south London.

The children - two twin boys aged three and a four year-old girl - were found dead at their £1.2 million home in the affluent suburb of New Malden.

Their parents were named locally Gary and Tania Clarence, who also have an elder healthy daughter.

Police at the house in New Malden today Picture: Jeremy SelwynMrs Clarence, 42, a graphic designer, was arrested when officers were called to her five bedroom home in Thetford Road after an emergency call at around 9.30pm last night.

Police said she had suffered minor injuries and was taken to hospital but was later discharged and arrested on suspicion of murder.

Her husband, Gary Clarence, 43, is a senior executive at the City bank group Investec. He is not thought to have been at home at the time.

A police officer and forensic officer outside the house last night Picture: Nigel Howard

There were reports that the eldest daughter, aged seven, who attends a private school The Study in Wimbledon, was on holiday in South Africa with Mr Clarence. They were said to be on flight back today. 

Shocked friends and neighbours described them as a "lovely, respectable middle class family" who had moved to their home around two years ago.

The couple, both from South Africa, are said to have spent thousands of pounds refurbishing the Victorian house to make it open plan to accommodate wheelchairs for their disabled children.

The younger children were described by friends as suffering from a muscular dystrophy disease called spinal muscular atrophy.

The couple had a perfectly healthy elder daughter but when their second child Olivia was two years old they began noticing she had developmental problems, friends said.

Police officers at the scene last night Picture: Nigel Howard

At the same time, Mrs Clarence was pregnant with twin boys.

After doing a series of tests, doctors established the parents were carriers for the disease and that their daughter Olivia may not live to be teenager.

A friend said: “The twins could not function at all. They had no muscle strength whatsoever. It was so devastating. They realised their daughter was not developing properly and then discovered this awful genetic condition

Children leave tributes at the scene where the children died

“Her life was just so difficult. Always having different carers in and out of the house, transforming everything to make it accessible for wheelchairs. It was just so much to cope with.”

Joy Devis, 86, who saw the family just two days ago, said: "One of the children never got out of the wheelchair and the other two have difficulty in walking.  They always seemed very happy and were delightful neighbours.

"Because they are so busy they had a full time nanny and a maid for when the mother goes to work.

"I used to see them playing in the garden. They were a delightful family and it's a terrible shock. They seemed perfectly happy.”

One neighbour said: "I was at a barbecue with them two weeks ago. They were there with one if their daughters. The seemed very happy and were laughing and joking. He was talking about golf and has been on a recent trip to the US. They seemed like a happy family this is a total shock."

Flowers and cuddly toys left at the scene today 

Another neighbour, who used to socialise with the couple, said: “ It’s a total surprise for me, I would never have expected it to happen. It’s a total shock to me.

“They were a very nice couple and we had them around for dinner. Who knows what the circumstances were, but it’s very tragic.”

Harry Flinders, 60, a lawyer, said: “It was  a very old house, very dilapidated and they spent quite a lot of money doing it up. I gather they had some disabled children because they had ramps installed inside and other special apparatus.”

Mr Clarence, a keen golfer, is a senior executive at City bank Investec. He joined the company in 1999 after studying in SOuth Africa and worknig as a solicitor. He began in the finance department before moving to the US for 18 months, later becoming head of healthcare after moving back ot the UK.

Children place plant pots in tribute after the news of the children's deaths emerged

A spokesman for Investec said it was doing “all it could” to help.

He said: “This is a desperate tragedy and a private matter. Gary Clarence is a valued colleague and has worked with us for many years.

“We do not know the facts but at this time our thoughts are with the Clarence family.

“We are doing all we can to help Gary and his eldest child.”

The five-bedroom house was sealed off behind a police cordon as the investigation continued. An Audi estate car, silver Land Rover Discovery and a Hyundai 4x4 were parked in the driveway.

Forensic offices could be seen working in a first floor bedroom, thought to be a child’s room.

A Kingston Council spokesperson said: “We are deeply saddened to hear of the deaths of three children from New Malden.  Our thoughts and sympathy are with the family.  We are unable to make any further comment at this time as this is an ongoing police investigation.”

http://www.standard.co.uk/news/crime/mother-arrested-over-the-deaths-of-her-three-disabled-children-at-their-home-in-new-malden-9276884.html

Yolanda Nowlin, of Texas Heads to Prison for 11 yrs in Health Care Fraud Conspiracy

as posted by ...

HOUSTON (April 23, 2014) – Yolanda Nowlin, 42, has been ordered to federal prison for 11 years following her multiple convictions in relation to a large health care fraud conspiracy, announced United States Attorney Kenneth Magidson. A federal jury in Houston convicted Nowlin Sept. 4, 2013, following seven days of trial and less than three hours of deliberations.

At the sentencing hearing late yesterday, U.S. District Judge Sim Lake handed Nowlin a total sentence of 132 months in federal prison - 120 months for conspiracy to commit health care fraud to be served consecutively to a 12-month sentence for health care fraud, conspiracy to violate the anti-kickback statute and Social Security fraud. She was further ordered to pay $744,105 in restitution to Medicare and Medicaid and $106,492.10 to the Social Security Administration. In handing down the sentence, Judge Lake noted the fraud occurred over several years, harming beneficiaries, the public and the Medicare and Medicaid systems. Nowlin will also be required to serve three years of supervised release following completion of the prison term.

Nowlin, of Bryan, ran two durable medical equipment companies - Yellabone Medic Care Express Equipment Supply Company and Yellabone Medical Equipment Inc. Nowlin was arrested in December 2012 along with co-defendant Carla Parnell, 51, also from Bryan. Parnell pleaded guilty earlier this year to Social Security fraud and testified against Nowlin at the jury trial. Parnell is scheduled to be sentenced May 15, 2014. 

The evidence at trial showed that between July 2003 and December 2009, Nowlin engaged in a scheme to defraud Medicare and Medicaid. Nowlin submitted claims to Medicare and Medicaid for durable medical equipment (DME) and incontinence supplies that were not delivered, not wanted and not needed by Medicare or Medicaid beneficiaries and were often the result of illegal kickbacks. During the alleged conspiracy, Nowlin submitted approximately $3,391,771.90 in claims to Medicare and Medicaid and received $1,108,316.82 for those claims. A total of $744,105 was identified as fraudulently paid.

The evidence at trial also showed that Nowlin paid kickbacks to a large number of recruiters over the course of the scheme in return for the referral of beneficiaries to Yellabone.

Nowlin was additionally convicted of aiding and abetting the theft of government money from the Social Security administration. Nowlin and Parnell concealed Parnell’s employment with Yellabone in order to continue Parnell’s receiving Social Security disability benefits to which she was not entitled.

Previously released on bond, Nowlin was taken into custody following the sentencing today where she will remain pending transfer to a U.S. Bureau of Prisons facility to be determined in the near future.

The case was the result of a joint investigation conducted by agents from Texas Attorney General’s Office – Medicaid Fraud Control Unit and the Department of Health and Human Services-Office of the Inspector General, Office of Investigations. Special Assistant United States Attorneys Adrienne E. Frazior and Suzanne Bradley prosecuted the case.

http://www.justice.gov/usao/txs/1News/Releases/2014%20April/140423%20-%20Nowlin.html

Chicago company will have to pay $80,000 to a man it refused to hire because he had prostate cancer

as posted by U.S. Equal Employment Opportunity Commission (EEOC) ...

PRESS RELEASE
4-21-14

Professional Freezing Services to Pay $80k under Consent Decree Ending Disability Discrimination Suit

Owner Said Prostate Cancer Patient  Refused Hire Would 'End Up Wearing Diapers,'  Federal Agency Charged

CHICAGO - The federal district court in  Chicago has entered a consent decree requiring Professional Freezing Services,  LLC, a Southwest Side Chicago provider of logistical services to the  refrigerated and frozen food markets, to pay $80,000 and provide other relief in  order to resolve a disability discrimination lawsuit brought by the U.S. Equal  Employment Opportunity Commission (EEOC), the agency announced today. 

In its  lawsuit, the EEOC charged that Professional Freezing, which operates a largely  refrig­erated 165,000-square-foot facility near the intersection of the  Stevenson Expressway and South Cicero Avenue, violated  the Americans with Disability Act (ADA) when it refused to hire William Harvel  because he had prostate cancer.  A former  employee later testified under oath at his deposition that he had heard company  owner Edward Gryzwacz make derogatory statements about Harvel and his  disability, including that he could not hire Harvel because he had cancer, and,  "in a best-case scenario, would end up wearing diapers."

Such alleged conduct violates the ADA.  The EEOC filed suit (EEOC v. Professional Freezing Services, LLC, N.D. Ill. No. 04183) June  5, 2013 in U.S. District Court for the Northern District of Illinois after  first attempting to reach a pre-litigation settlement through its conciliation  process.  The case was originally  assigned to District Judge Ruben Castillo. 

The consent decree ending the case was  signed by U.S. Magistrate Judge Susan Cox on April 15, 2014.  In addition to requiring the company to make  the $80,000 payment to Harvel, the two-year consent decree enjoins the company  from engaging in any practice in the future that discriminates on the basis of  disability, including refusing to hire qualified individuals because their  disabilities, and it bars retaliation against individuals asserting their rights  under the ADA.  The decree also requires  Professional Freezing to provide training to  all employees, including Gryzwacz, regarding its obligations under the ADA with  respect to the hiring of individuals with disabilities;  to submit periodic reports to the EEOC about  any complaints of disability discrimination; and to post a notice regarding the  outcome of the lawsuit on its employee bulletin board for two years.

"There  is hardly a family in America that has not been touched by cancer in one form  or another," said EEOC's Chicago Regional Attorney John Hendrickson.  "Through the crucible of that experience,  those families and most employers have learned that cancer patients and  survivors can and do work, and work well.   Protecting their right to do so in the face unlawful bias is what the  ADA is about, and why EEOC was determined to pursue this case to the result we  announce today."

The EEOC litigation team on the case  was led by Supervisory Trial Attorney Diane Smason and included Trial Attorneys  June Calhoun and Brandi Davis.

Calhoun said, "The testimony in this  case was clear-cut and unassailable.   That helped us in achieving this clear and effective settlement."

The EEOC's Chicago District Office is  responsible for processing discrimination charges, administrative enforcement,  and the conduct of agency litigation in Illinois, Minnesota, Wisconsin, Iowa,  North Dakota and South Dakota, with Area Offices in Milwaukee and  Minneapolis. 

The EEOC enforces federal laws  prohibiting discrimination in employment.   Further information about the Commission is available on its web site at www.eeoc.gov .

http://www.eeoc.gov/eeoc/newsroom/release/4-21-14a.cfm

Walk MS to Take Place May 4 at 11 Illinois Location, Please join us!

as shared by ...

  

Annual Walk Raises Money for Research and Support of People Affected by Multiple Sclerosis

Chicago, April 22, 2014 — Walk MS, the largest annual fundraiser of the National Multiple Sclerosis Society, Greater Illinois Chapter, is less than two weeks away. The event takes place on May 4 at 11 locations statewide, including Bloomington, Chicago Lakefront, McHenry County (Lake in the Hills), North Shore (Glenview), Northwest Suburbs (Palatine), Rockford, St. Charles, South Suburbs (Orland Park), Southwest Suburbs (Lockport), Springfield and West Suburbs (Naperville). Walk MS brings people together across the country to celebrate the progress and powerful connections made in the movement to end MS.

“Walk MS is truly an amazing event,” said Deb Ibarra, who participates in the Southwest Suburbs Walk. “As a person newly diagnosed with MS, it really was the best experience. We got to meet people at all different stages and the support from the volunteers who came up, asked about my story, provided hugs and words of encouragement was just incredible.”

Event participants have the option of walking 1–6 miles (depending on the site) on one of the fully accessible routes. Registration and start times vary based on location, with registrations ranging from 7:30 a.m.–noon and start times from 9 a.m.–1 p.m.

“For many people living with MS, this is one of the best and most important days of the year,” said John Blazek, Greater Illinois Chapter President. “Whether it’s through participating at one of our Walk sites, volunteering, fundraising or recruiting a friend or family member to be part of the movement, the amazing turnout of thousands of supporters for this signature event helps bring us that much closer to our ultimate goal of a world free of MS.”

Last year, more than 20,000 people participated in Walk MS throughout Illinois, raising over $2.7 million to fund MS research, programs and services, making it one of the largest MS fundraisers in the nation.

Multiple sclerosis is an unpredictable, often disabling disease that interrupts the flow of information in the central nervous system, which includes the brain, spinal cord, and optic nerve. The Greater Illinois Chapter of the National Multiple Sclerosis Society mobilizes people and resources to drive research for a cure and to address the challenges of more than 20,000 individuals in Illinois and 2.3 million worldwide affected by MS.

To find out more or to register or make a donation, contact Samantha Edidin at 312.423.1156 or at samantha.edidin@nmss.org, or visit walkMSillinois.org.

###

Do You Support #CRPD ?? Share your story with U.S. Senator Harkin - NOW

as shared by United States International Council on Disabilities ...

Senate Champions are committed to getting the treaty passed in 2014 -- and are speaking out!  Senator Harkin Needs Your Help to Move the Disability Treaty through the Senate!!! Do you have a disability and had difficulty studying or traveling abroad? Did you go abroad for work and found challenges when you arrived? Were you unable to travel at all because of inaccessibility?  Your story can help in Senator Harkin's work to pass the Convention on the Rights of Persons with Disabilities (CRPD) -- by putting a FACE to why it is important!   Senator Menendez remains committed to getting the CRPD passed THIS year! Click above to watch Senator Menendez speak about the CRPD at the MS Society's Public Policy Conference! Both Senators are committed to a floor vote on the CRPD this year, but they need our help to get it done!     The CRPD is an international treaty that eliminates barriers and discrimination against people with disabilities around the world. Share your story about why the U.S. Senate needs to pass the CRPD this year at:  http://bit.ly/shareCRPD You can also share your support of CRPD on Twitter and Facebook with the hashtags #selfie #CRPD!  Take additional action at: www.disabilitytreaty.org

Celebrating a Disability Rights Pioneer: Ed Roberts

wanted to share this wonderful disability history article/video...

Ed Roberts is one of the most important pioneers of the disability rights movement. Roberts was a talented athlete with dreams of playing professional baseball when he was disabled by polio in 1953 at the age of 14. Having a disability taught him many things, not the least of which was the importance of a good education. He could only move a couple of fingers and a couple of toes, yet he attended three years of high school by phone while lying in his iron lung at home.

After a senior year back in the school building, Roberts still had to fight to be allowed to graduate, but eventually he received his diploma with his mom Zona by his side. When he went to college and graduate school, he had to find a place to live on campus that could accommodate the iron lung he slept in every night.

Roberts also started using a power wheelchair while he was in graduate school. If you’ve ever used a curb cut to help you cross a street with a stroller, a rolling suitcase or a wheelchair, you can thank Ed Roberts and his allies with disabilities. His iron lung and his power wheelchair are now in the collection of the Smithsonian Institution here in Washington, D.C.

Besides his advocacy for educational rights, Roberts was a founder of the Independent Living (IL) movement and director of Vocational Rehabilitation (VR) in California. Both IL and VR have been part of the Department of Education since it began, and the programs operate in all 50 states and DC. Later in his life, Roberts took time to speak to hundreds of young adults with disabilities and parents of children with disabilities across the US. That’s where I met him, when my son Charlie was only seven years old. Roberts taught what nobody else did: that people with disabilities belong everywhere; that a student with the most profound disabilities has a lot to offer in any classroom; and that my job as a parent was to ensure that my son could make his own choices, and make his own voice heard, even if he couldn’t speak. Ed showed every day that charisma is not limited to able-bodied people, and that just being present is a form of advocacy. No wonder he won a MacArthur fellowship “genius” award: he helped us all understand that learning to thrive with disability was about expectations, education, employment, and empowerment above all else.

In January, the Department of Education’s Office of Special Education and Rehabilitative Services invited current and emerging leaders of the civil rights movement of people with disabilities to celebrate Roberts’s life. Guests discussed their own experiences in the civil rights movements of people with disabilities, the impact Ed Roberts had on their lives, and the importance of sharing his story with future generations of students.

Many students and families still don’t know about the civil rights movement of people with disabilities. Empowerment comes with knowledge. Learning about Ed Roberts is a great place to start.

To learn more about Ed Roberts and the civil rights movement of people with disabilities the Minnesota Governor’s Council on Developmental Disabilities website.

Sue Swenson is deputy assistant secretary in the Office of Special Education and Rehabilitative Services

CMS eHealth Summit Live Webcast Sessions - Mon, May 19, 2014 - Register

as shared by....

Join CMS on Monday, May 19 to hear about important eHealth topics CMS invites you to view the live webcast sessions during the CMS eHealth Summit on Monday, May 19, 2014 from 9:00 a.m. to 3:30 p.m. ET. Please join CMS and health care industry leaders to: Get the latest on Administrative Simplification initiatives Learn more about Information Governance for Healthcare through a panel led by the American Health Information Management Association (AHIMA) Hear from the Center for Medicare & Medicaid Innovation (CMMI) about  Stage 3 meaningful use and how it will affect care delivery and payment reform Join in on a Healthcare Information and Management Systems Society (HIMSS) panel discussion on quality initiatives and the impact they have on primary care Register Today All summit sessions will be webcast live. You must be registered to view the live webcast sessions. If you have not yet registered, please register to view the live webcast sessions. A link to access the live webcast sessions will be emailed to all registrants prior to the summit. To view the summit agenda, please click here. Want more information about CMS eHealth? Make sure to visit the CMS eHealth website for the latest news and updates.

How Medicaid forces the disabled to be poor (but some bipartisan help is on the way)

BY HAROLD POLLACK; Washington Post | April 22, 2014

Veronica Perrone Pollack and Vincent Perrone blow out candles. Photo by Harold Pollack.

Imagine that you are a young woman expecting your first child. Then you get into an awful crash that leaves you in a wheelchair. Or imagine that you suffer a high school wrestling injury that results in quadriplegia. Or imagine that you are intellectually disabled or living with severe mental illness, and you require long-term services and supports. If you have been reading my work, you might do more than imagine, since each of these stories involves real people who have experienced the best and the worst of what our American medical welfare state offers.

Medicaid plays a crucial role in each story. Of course the program has familiar shortcomings. Long-standing administrative challenges, ideological polarization over health reform perpetuate these difficulties. So does our nation’s tenuous commitment to the well-being of disadvantaged citizens.

On occasion, though, disability policy provides a welcome exception to this depressing pattern. Going back to the 1950s, liberal Democrats, conservative Republicans, and others in-between have made essential contributions, helping millions of people live happier, more productive, and fuller lives. My family is certainly quite grateful for the help provided to my brother-in-law Vincent, who requires a variety of Medicaid-financed services to address his Fragile X syndrome. Medicaid is essential in his life, and in the lives of 8.8 million other non-elderly Americans who live with significant disabilities.

Medicaid does have one huge flaw, which hurts millions of people living with disabilities, injuries, or chronic illness. You have to live, officially at least, as a pauper. With important variations across the states, most recipients are forbidden from having more than two or three thousand dollars in the bank.

You can generally keep your house or your car. That’s pretty much it. You can’t have that emergency fund on hand in case the muffler or the furnace breaks. And what about the stuff Medicaid doesn't cover? It’s nice to get your teeth cleaned or just to buy a Big Mac every once in awhile. Because of such means-testing, that new mother is forbidden from setting any money aside for her child’s education. That food services worker living with intellectual disabilities can’t save up for a nice vacation.

Then there’s retirement. As Joe Entwisle put things:

"The reality for someone in my situation is that retirement usually isn’t an option. You work until you die, literally. A friend of mine is a perfect example. It’s almost creepy the similarities in our life. Both of us had a spinal cord injury at 16. Both of us were injured wrestling. Both of us are policy analysts. He’s a really good guy. He’s 63 years old. He started working for the state many years ago. Yet because of the odd rules around Medicaid eligibility and the differential treatment of earned and unearned income, he literally cannot retire. He knows he has to work until he’s dead or until some rules change. As soon as he starts to draw [retirement income], he’s not going to be eligible for health-care programs or he’ll have to spend down to essentially $710 a month. He could no longer afford his house. He could no longer afford even the taxes on the house."

The current system has other problems, too. First, there is the ironic class bias that so often accompanies complicated rules. If your caregiver happens to be a University of Chicago professor, you have access to skilled lawyers who can draw up the proper wills and special needs trusts to side-step many official requirements.

Families with less financial or social capital often go without. Others dangerously improvise. Maybe an octogenarian parent leaves all of her money to her oldest son, with an implicit understanding that he’ll use half of these funds for his younger sister. Suppose he gets divorced or misuses the money? How many other ways can this go wrong?  Means-testing encourages families to cut corners. Worse, it hinders precisely the long-term planning that every person with a disability and every family should do.

These requirements seem especially strange in the wake of health reform. If you’re on Medicaid because you had a spinal cord injury, you face punishing limitations on your allowable financial assets. If you qualify for Medicaid on the basis of low-income, you don’t face the same limitations. There’s no real justification for this inconsistency. Its one virtue may be that it could prove politically generative, in promoting beneficial reforms. It’s hard to believe that the disability community or the American public will long tolerate this discrepancy.

Things are already beginning to move.

The Achieving a Better Life Experience (ABLE) Act of 2013 provides one example. The ABLE Act was introduced last year, and it’s on the legislative agenda again this year. Identical versions are co-sponsored by seventy senators and by 359 members of the House. Pennsylvania Democrat Robert Casey, Jr. and his Republican counterpart Richard Burr introduced the Senate bill. Representatives Ander Crenshaw, Chris Van Hollen, Cathy McMorris Rodgers, and Pete Sessions introduced the counterpart House bill. It’s amazing to see Senators Bernie Sanders, Jay Rockefeller, Mitch McConnell, and James Imhofe co-sponsoring the same bill.

John Rizzo, press secretary to Senator Casey, told me that he anticipates a vote in the coming weeks. Sponsors are waiting for the Congressional Budget Office to issue a budget score. Once that happens, Rizzo is optimist that the bill can become law in the next few months.

I’m sure ABLE accounts will bring some complicated financial mechanics, but the concept behind them is simple. These allow people living with disabilities to establish accounts similar to the 529 educational accounts that many of us have established for our kids. The balance of these ABLE accounts, and their investment returns, can be used for educational expenses, housing, transportation, assistive technologies, and other basic needs.

For many people, this reduces the need for complicated record-keeping and paperwork. It’s cheaper and easier than the complicated special needs trusts many of us have spent thousands of dollars to create and manage. It provides tax advantages. It legitimates what families are often already doing in less transparent and efficient ways. It doesn’t address retirement and some other key issues, but it’s very helpful.

It’s hard to oppose that, wherever you reside on the political spectrum. As Senator Robert Casey put things over email:

"The best advocates for this bill are the people who are dealing with these challenges like Sara Wolff of Northeastern Pennsylvania. When people like Ms. Wolff, who has Down syndrome, talk about the challenges they face and the dreams they have for their lives it inspires action. Further, Democrats and Republicans have rallied behind the ABLE Act because it is a commonsense approach that uses a proven model--the 529 account."

The decidedly middle-class shading helps to explain this bill’s broad support. The engineer whose youngest son lives with Down syndrome immediately sees the value of an account like this. She also has the cash to put in it.

ABLE accounts are less useful to some of my brother-in-law’s peers. Some come from very poor families. For others, ABLE accounts just come too late. They have outlived their intimate caregivers or at least these relationships. Many live entirely on federal disability benefits and nutrition assistance. Under typical terms in many settings, almost all of these benefits are signed over to the group homes and other facilities in which they live. Residents get to keep $50 per month for all of their discretionary expenses from dental visits to the occasional tee shirt, movie ticket, or McDonald’s hamburger. 

Here in Illinois, 23,000 children and adults are somewhere on the long waiting list for in-home services, residential placement and other services. These families require more generous benefits more than they need 529-style accounts. And that’s a heavier financial and political lift. Others live in states with other difficulties. Rizzo notes that Senator Casey has encouraged Pennsylvania to embrace the Affordable Care Act’s Medicaid expansion to address poverty-related issues more effectively.

Although more remains to be done, the ABLE Act promises to be a humane and valuable contribution to public policy. In an era disfigured by mean-spirited and polarized gridlock politics, this is no little thing. 

http://www.washingtonpost.com/blogs/wonkblog/wp/2014/04/22/how-medicaid-forces-the-disabled-to-be-poor/