The Handiest Girlie Of All

Police force’s sloppy investigations leave abuse of disabled unsolved

Donna Lazzini embraces her son, Timothy Lazzini, a resident of the Sonoma Developmental Center who died in 2005. The picture is part of a family photo collage celebrating his life.

California has assembled a unique police force to protect about 1,800 of its most vulnerable patients – men and women with cerebral palsy, severe autism and other mental disabilities who live in state institutions and require round-the-clock monitoring and protection from abuse.

But an investigation by California Watch has found that detectives and patrol officers at the state’s five board-and-care institutions routinely fail to conduct basic police work even when patients die under mysterious circumstances.

Federal audits and investigations by disability-rights groups, as well as thousands of pages of case files, government data and lawsuits dating back to 2000, show caregivers and other facility staff allegedly involved in choking, shoving, hitting and sexually assaulting patients. None of these cases were prosecuted.

 

Cases investigated as possible crimes include the death of a severely autistic man whose neck was broken. Three medical experts said the 50-year-old patient, Van Ingraham, likely had been killed. But the developmental center’s detective, a former nurse who’d never handled a suspicious death, failed to identify how the fatal injury occurred.

The police force, called the Office of Protective Services, often learns about potential criminal abuse hours or days after the fact – if they find out at all. Of the hundreds of abuse cases reported at the centers since 2006, California Watch could find just two cases where the department made an arrest.

The people that the police force is sworn to protect have profound developmental disabilities and live in a different world from most Californians. Some patients have spent decades in the centers, from childhood to death. Some cannot form words and have IQ scores in the single digits.

The precise number of times nurses, janitors or staff supervisors have been implicated in patient abuse cases is unknown; the state has censored thousands of pages of documents detailing the cases.

California is budgeted to spend $577 million this fiscal year to operate the centers, or roughly $320,000 per patient. More than 5,200 people work in the institutions – roughly 2.5 staff members for each patient. The five centers are in Los Angeles, Orange, Riverside, Sonoma and Tulare counties.

In most other states, local law enforcement or state police take the lead in conducting criminal investigations at developmental centers.

Critics of the state Department of Developmental Services, which oversees the institutions and the Office of Protective Services, have said the tight-knit atmosphere between the in-house police and staff makes it difficult to create a separation between the investigators and the investigated.

In a few cases, caregivers and others with minimal police training have been hired to work as law enforcement in the same facility. The commander at the Lanterman Developmental Center in Pomona worked there as a primary caregiver. The force’s police chief is a former firefighter at the Sonoma Developmental Center.

The police force also suffers from a convoluted chain of command, interviews and records show. Detectives cannot make arrests without checking with department lawyers in Sacramento. Local police must be informed when serious injuries or deaths occur, but most defer investigations to the Office of Protective Services.

“It seems like something is not working in California. And that’s probably a major understatement,” said Tamie Hopp, an official with the national organization Voice of the Retarded, who noted the volume of abuse cases in California, and the lack of prosecutions, is cause for alarm.

Monica Lam/California WatchTerri Delgadillo, director of the Department of Developmental Services, said she has hired a consultant to advise her office on practices at the Office of Protective Services

Terri Delgadillo, director of the Department of Developmental Services, said her department has a zero-tolerance policy that includes reporting any injuries, even those remotely suspicious, to the state Department of Public Health. She said the department is committed to conducting thorough investigations.

“For the department, the priority is to make sure that we’re doing the best job providing consumer safety and services,” Delgadillo said in an interview. “And if there are issues that need to be addressed – and there’s always room for improvement – we’re looking to do that.”

She has hired a consulting group, the Consortium on Innovative Practices based in Alabama, to review the methods and training of her police force. The nonprofit group was recommended by the U.S. Department of Justice, which issued a scathing critique of the department in 2006.

The department said that from January 2008 to last month, 67 developmental center employees were fired for “client-related” offenses. But officials declined to say how many of those, if any, were dismissed for abusing patients, where they worked or if any of them had been arrested.

Delgadillo also declined to comment on specific cases of alleged abuse or mistreatment at the developmental centers, citing patient privacy laws. Corey Smith, the former firefighter who is now police chief, said he was not permitted to speak with reporters for this story.

Abuse cases increase

The developmental centers have been the scene of 327 patient abuse cases since 2006, according to inspection data from the California Department of Public Health. Patients have suffered an additional 762 injuries of “unknown origin” – often a signal of abuse that under state policy should be investigated as a potential crime.

At the state’s five centers, the list of unexplained injuries includes patients who suffered deep cuts on the head; a fractured pelvis; a broken jaw; busted ribs, shins and wrists; bruises and tears to male genitalia; and burns on the skin the size and shape of a cigarette butt.

 

Timothy Lazzini, a quadriplegic cerebral palsy patient at the Sonoma Developmental Center, died in 2005 after he swallowed 4-inch swabs that shredded his esophagus. After his death, Lazzini’s doctor and a pathologist concluded it was highly unlikely that Lazzini could have placed the swabs in his own mouth.

But records show detectives waited too long to start their investigation. If any physical evidence was left in Lazzini's room, it had been removed by the time investigators arrived.

His death, and the slow response by the Office of Protective Services, has left Lazzini’s family heartbroken and without a conclusive answer as to how he was killed.

“He is gone and they really haven’t given us as a family the information that we need to be at peace,” said Stephanie Contreras, Lazzini’s sister. “There is no peace at all.”

The rate of suspected abuse cases within the walls of the five institutions has risen – even as hundreds of developmentally disabled patients have been moved to group homes and smaller nursing facilities.

The patient population at developmental centers dropped by 12 percent from 2008 to 2010, state records show, but reports of abuse have increased 43 percent during those three years. Unexplained injuries jumped 8 percent in the same period.

Public health officials acknowledged the state doesn’t keep a tally of the number of times caregivers have abused patients. That information is kept hidden from the public in individual case files.

Kathleen Billingsley, director of policy and programs for the Department of Public Health, said she also didn’t know whether inspectors were notifying law enforcement agencies when they uncover evidence of abuse. She said public health inspectors conduct thorough investigations separately from the police.

“If there is any cross between enforcement individuals at the state facility and the work we do, I am not familiar with that,” Billingsley said.

The Los Angeles County district attorney’s office, which oversees Lanterman, couldn’t identify a single criminal case referred from the center’s police force. District attorneys in Tulare, Orange and Riverside counties also reported no prosecutions for patient abuse in the past decade. Sonoma County refused to disclose its records.

On average, police in California solve about two-thirds of all homicides and about half of all aggravated assaults – or at least make an arrest and “clear” the cases. The clearance rate for the Office of Protective Services is unknown because the department keeps the information secret.

Thankless jobs, hidden from the public

The Office of Protective Services has existed in various forms and names since the late 19^th century, when California opened its first institution for the developmentally disabled. That facility in San Jose – first known as the Agnews Insane Asylum – opened in 1885 and closed in 2009.

Interviews with current and former Office of Protective Services employees suggest the organization’s structure from its beginning has contributed to its dysfunction.

Patrol officers dress much like those at any other police department. They wear tan and green uniforms with gold badges. Handcuffs are hooked to their belts. They drive marked squad cars. But there are key differences.

Officers and caregivers are confined together in a 24-hour facility monitoring an unpredictable, sometimes uncontrollable population. Beyond a paycheck, the job is mostly thankless and hidden from the public. Officers are not allowed to carry guns; many carry pepper spray instead. They often work their shifts alone.

Greg Wardwell, a sergeant who spent more than 20 years patrolling the Sonoma Developmental Center before retiring last year, said the state has undermined its own police force through neglect and incompetence.

“You can look like a cop and we’ll call you a cop, but you don’t really have any way of being a cop,” Wardwell said. “Because we’re not going to train you, we won’t provide safety equipment. The salary will be so bad that we won’t be able to recruit anybody of talent.”

Salaries for the roughly 90 sworn officers are half of what police earn in the state’s big city departments. Yet, roughly a third of officers within the Office of Protective Services are among the best compensated in California law enforcement, with much of their pay gained through overtime. One officer’s income has topped $200,000 a year.

Families must rely on the Office of Protective Services to provide evidence for lawsuits when their relatives are harmed or killed at a developmental center. Records show the state paid out nearly $9 million in legal settlements – out of 68 separate lawsuits – from 2004 to 2010.

In 2005, Disability Rights California issued a report on a pattern of unexplained genital lacerations suffered by male patients at an unnamed developmental center. The cases were potentially sex assaults, but the investigations were woefully incomplete, documents show.

“Photographs were not taken,” the report states. “Not all witnesses, nor all key witnesses, were interviewed. Physical evidence was not collected. Victims did not receive thorough medical workups to look for other indications of abuse.”

Leslie Morrison, director of investigations at Disability Rights California, said the report showed how the developmentally disabled can be treated as second-class citizens.

“If this had happened to 3-year-old boys in a day care center, people would have been alarmed, police would have been called, there would have been an outrage,” Morrison said. “It wouldn't have just been treated as just, 'Oh, look, there's a cut, we better sew that up.' ”

In the case of the 50-year-old autistic man, Van Ingraham, his family received $800,000 in a settlement with the state. Ingraham died in 2007 after sustaining a broken neck while in his room at the Fairview Developmental Center in Orange County.

Fairview officers didn’t collect physical evidence from Ingraham’s room, records show. Detectives overlooked evidence that a caregiver last seen with Ingraham had altered the log of his activities. And they omitted from the case file an expert’s opinion that Ingraham’s death “was likely a homicide.”

“This incompetent, horrendous organization called Office of Protective Services takes it and just makes a mess, just a complete mangled mess of the investigation,” said Larry Ingraham, the patient’s older brother and a veteran of the San Diego Police Department.

Sexual assaults unprosecuted

Sex abuse cases, too, have been shelved without prosecution.

In April 2010, at the Canyon Springs Developmental Center in Riverside County, a janitor twice sexually abused a mentally disabled female patient when caregivers were out of sight. Under California law, having sex with any developmentally disabled person who is incapable of giving consent is considered rape.

The patient, who is not identified in state records, had a history of being assaulted. She was institutionalized at age 12 after her father impregnated her, a state health department citation shows.

The patient had been diagnosed with moderate mental retardation, schizoaffective disorder and post-traumatic stress disorder. Canyon Springs staff had been working with her to curb any behavior “possibly leading to sexual activity,” her file states.

The female patient, then 39 years old, told center employees she “did it” with the janitor in the women’s bathroom and in a hallway during a fire drill. An unidentified Canyon Springs employee notified the state Department of Public Health.

The Office of Protective Services investigated the case but made no arrests. State regulators also investigated and ruled the incidents as sexual abuse, according to a citation issued to Canyon Springs.

In December 2010, Canyon Springs was fined $800 by public health officials for the incidents. No criminal charges followed. The Riverside County district attorney’s office said it has no record of receiving any case referrals from Canyon Springs, which houses about 50 patients.

Rather than placing the janitor under arrest, developmental center officials ordered him to undergo training on his “legal duty” regarding patient abuse, according to state records.  

The Office of Protective Services concluded that the janitor didn’t commit a crime, Delgadillo said. She declined to answer other questions about the incident or to say whether the janitor, whose name the state has redacted from case files, continues to work at Canyon Springs.

In another case with even fewer details available, a female patient at the Sonoma Developmental Center accused a male caregiver of sexually assaulting her during a bath in early 2000, police records show. The institution responded by assigning two men to bathe the patient.

On July 6, 2000, both caregivers allegedly raped her, again during bathing.

The institution did not inform its own police officers about the details of either incident. Records show Ed Contreras, then Sonoma’s police commander, received an anonymous tip four days after the second alleged rape.

“They weren’t following the law,” Contreras said in an interview. “They weren’t reporting it to the police department. They weren’t reporting it to me.”

Contreras said no arrests were made in the sex assaults. The Sonoma County district attorney’s office declined to release records on the cases or any other criminal allegations from the developmental center.

Inside institutions, a different world

The Sonoma Developmental Center is located in a quaint neighborhood in the middle of wine country. Fairview in Costa Mesa is near the Orange County fairgrounds and surrounded by strip malls and a golf course. Lanterman is wedged between train tracks and a highway east of Los Angeles.

Next door to a Cathedral City cemetery, tiny Canyon Springs could be mistaken for an office park. The Porterville Developmental Center, southeast of Visalia, does have the look of an institution. Among the 500 patients, the facility houses about 200 developmentally disabled patients who have committed crimes or who are under arrest.

Inside, the centers feature wide hallways. Walls are decorated much the same as elementary school classrooms, with colors and construction paper cutouts to signal upcoming holidays.

Primary caregivers, called psychiatric technicians, guide patients from place to place, feeding them and distributing medication. Each patient communicates differently, and the units are filled with shouts, groans, shrieks and crying. Patients share bedrooms. Some are crowded with stuffed animals, posters and family pictures. Others are empty, save for the full-sized beds and a cabinet.

Parents and siblings can visit every week for hours at a time. Fairview patients range from 15 to 94 years old, said Bill Wilson, the institution’s executive director. Most are between the ages of 40 and 60.

More than two-thirds of patients are diagnosed with profound mental disabilities, according to research from UC San Francisco. The institutions have whole units for patients who are emotionally volatile, prone to striking themselves and others.

The disabled population adds greater complexity to criminal investigations. For a host of reasons, their observations can be tainted by fantasies and falsehoods. Their emotions veer from happy to inconsolable without warning. Patients slap and punch at their faces and legs, and at each other.

“They come to us after they’ve burned every bridge in the community,” said Erinn Kanney, a program manager at Fairview.

Outside of California, local or state police most often are responsible for investigating criminal cases at institutions. But city and county law enforcement agencies inside the state have not shown an interest in developmental center cases and don’t have funding to expand their scope, according to Delgadillo.

“Oftentimes, local law enforcement does not want to get involved,” said Delgadillo, who in the past has worked for the California Department of Corrections and Rehabilitation as a manager in the juvenile justice division.

Local police or sheriff’s deputies can act more independently than an internal police force responsible for probes into their colleagues and bosses, said Jane Hudson, senior staff attorney for the National Disability Rights Network, a patient advocacy organization

“If there’s a crime committed,” Hudson said, “you let the criminal investigators go in first rather than the institution bagging the bloody shirt.”

 

Delayed notification hinders investigations

Delays by the Office of Protective Services often make cases harder to solve.

Although no public records exist showing how frequently the police force receives late notification of potential abuse cases, California Watch was able to identify at least a dozen incidents in which delays from 24 hours to several days occurred.

Forensic experts say the first hours following a crime are critical. A person walking through a crime scene can ruin fingerprints, DNA samples and other evidence, said Dennis Kilcoyne, a Los Angeles Police Department homicide detective. Witness statements can change with time, especially after they’ve conferred with others, he said.

“People’s emotions are in play, and they may say things that, after they’ve thought about it or consulted with an attorney, (they) won’t say a week from now,” said Kilcoyne, a 27-year veteran.

Delays have hurt criminal investigations and given the centers’ employees time to alter and destroy evidence, records and interviews show.

That’s what happened in the case of Timothy Lazzini, the 25-year-old quadriplegic patient with cerebral palsy, who coughed up a bloody glycerin swab at the Sonoma Developmental Center. He died from internal bleeding that night, Oct. 22, 2005.

Three swabs – each 4 inches long and twice as thick as a Q-tip – had torn Lazzini’s esophagus. He coughed out one, but two others remained lodged in his stomach, autopsy records show.

At that point in his life, Lazzini’s disabilities had left him mostly paralyzed, and he received food through a tube in his abdomen.

Someone at the developmental center likely put the swabs inside his mouth before he died. Dr. Ken Christensen, Lazzini’s doctor, told Office of Protective Services investigators that it was possible for Lazzini to swallow the swabs, but “it is unlikely for him to be able to pick it up and put it into his mouth.” The pathologist who performed Lazzini’s autopsy noted the same thing.

The Office of Protective Services assigned the case to a detective more than 24 hours after a caregiver discovered Lazzini bleeding from the mouth, the police file shows. By then, if any evidence was available at the scene, it was gone.

“I noted the area was cleaned up,” Rod Beck, the detective, wrote in his report. “I did not note G-swabs in the bedroom area and none were seen in the drawers of his dresser.”

The glycerin swabs are lemon flavored and intended to moisten a patient’s mouth, but caregivers were not supposed to use them on Lazzini, according to the case file. The patient did not have the physical ability to remove the swabs himself, one of Lazzini’s doctors told police.

During his interviews with caregivers, Beck learned that some technicians had been using the glycerin swabs as a pacifier for Lazzini, putting them in his mouth when he “got vocal.”

Lazzini’s caregivers all denied ever putting swabs in his mouth, however. Only one of the seven questioned by police admitted to using them on any patient.

Records that might have proven otherwise were destroyed, according to the police report. Daily caregiver notes from the previous week went missing. Someone blacked out information in two separate logs documenting patient care on the day Sonoma employees discovered Lazzini bleeding.

“The initials were heavily lined out,” Beck wrote.

Mark Czworniak, a Chicago Police Department homicide detective, reviewed the Lazzini case file for California Watch. He said that without records, crime scene evidence or corroborating statements from witnesses, there is no way to link anyone to the swabs that killed Lazzini.

It might have been multiple caregivers, Czworniak wrote, “or a completely unobservant health care worker, supplying Timothy L. with the G-swab one after another, not noticing, or caring where each swab disappeared to, and not surmising that Timothy L. was swallowing them.”

 

Stephanie Contreras reads through the case file on her brother, Timothy Lazzini, a 25-year-old quadriplegic who died of internal bleeding in 2005. An autopsy revealed two large, Q-tip-like swabs stuck in his stomach

 

Lazzini's sister, Stephanie Contreras, who lives in the Sonoma County town of Windsor, and other family members sued the state in 2006 over Lazzini’s death and settled two years later for $100,000.

The Department of Public Health also fined the Sonoma Developmental Center $90,000 in August 2007, citing “mistreatment, neglect or misappropriation of resident property” – the failure to prevent Lazzini from swallowing the swabs.

But the Office of Protective Services closed the Lazzini case without determining what had happened.

Oversight reorganized

For much of its history, the Office of Protective Services was fragmented, with officers reporting only to administrators at their own facility.

Then, after a series of critical stories about the Sonoma center in the local Index-Tribune newspaper, Sacramento officials took greater control of the Office of Protective Services. They created a statewide police chief and borrowed veteran officers from the California Highway Patrol to fill the job.

In 2006, the U.S. Justice Department’s Civil Rights Division criticized the care at Lanterman, in Pomona, in a letter sent to Gov. Arnold Schwarzenegger. They noted a failure to properly collect evidence, inadequate witness interviews, delays in beginning investigations and the inability to close unsolved cases.

The audit outlined the case of a patient, identified only as A.Z., who died on Aug. 7, 2002. The federal audit did not include details of the case but said the patient “died of multiple blunt force trauma after being stomped repeatedly in his bedroom at Lanterman.”

The Office of Protective Services identified two suspects – the patient’s caregiver and a roommate. Although there was evidence pointing to both men, the audit said, Lanterman police concluded the roommate had committed the crime but was too mentally impaired to face charges.

“Regardless of who was responsible,” the auditors said, “the fact that A.Z. suffered severe pain and ultimately died at Lanterman, in spite of the state’s obligation to keep him safe, is deeply disturbing.”

Patricia Flannery, the state official responsible for developmental center operations, said Lanterman has remedied the deficiencies documented by the justice department. “We haven’t heard from them in two years,” she said.

During the Schwarzenegger administration, however, the Department of Developmental Services hired less-experienced candidates to run the police force.

In 2007, the department hired Nancy Irving, a longtime government labor mediator, analyst and program manager, as the force’s interim police chief. She had not been certified as a law enforcement officer.

The career path of Victor Davis is not unusual.

Davis started at Lanterman as a part-time psychiatric technician in 1989, working his way up to a supervising caregiver. In 1998, the Department of Developmental Services put him on the police force as an investigator, skipping him over two ranks of police officers despite his lack of law enforcement background.

Today, Davis is Lanterman’s commanding officer, in charge of all criminal investigations. Davis declined to comment in detail, and attempts to interview him during a tour of Lanterman were cut off by a top-level official with the department.

The police force in 2008 added its first policies on investigating abuse and neglect, closing investigations, responding to sex assault and responding to a crime scene or emergency. But policies on preserving evidence, managing investigations and collaborating with outside law enforcement remain unwritten to this day. 

Detectives have not had the authority to send investigations to prosecutors themselves. In most police departments, officers and detectives begin working with prosecutors in the early stages of an investigation. Some district attorneys send their prosecutors to work hand in hand with police at crime scenes.

But the Office of Protective Services follows a different playbook. The agency’s manual states that detectives and commanders must clear cases with administrators and civil attorneys at the Sacramento headquarters before sharing cases with local police or prosecutors.

Delgadillo, director of the Department of Developmental Services for the past five years, said the police agency follows state standards for evidence collection.

Delgadillo said she has reorganized the force so that police commanders answer to Sacramento rather than local administrators at the centers. This move, which was fully enacted in 2007, is intended to protect against interference by employees and officials who might be implicated in wrongdoing, she said.

Delgadillo acknowledged the old policy had been a potential conflict of interest.

“They're reporting directly up to us to make sure that there's no conflict between the developmental center and the investigation that's actually being conducted,” Delgadillo said.

The department’s legal team exists to protect the state from civil liability claims, a fact that raises concerns among patient advocates and legal experts who say prosecutions and arrests for abuse of patients have taken a back seat.

Delgadillo said the Office of Protective Services submits cases to department lawyers first to ensure “the investigation and the information is as complete as possible.”

Since 2006, state regulators have confirmed 21 patient abuse cases and 173 injuries of unknown origin at the Lanterman Developmental Center in Pomona. But the Los Angeles County district attorney’s office said it is unable to find a single case referred by Lanterman investigators in the past decade.

And the head of the district attorney’s elder abuse and dependent adult section, Robin Allen, said she didn’t know the developmental center had its own officers and detectives. With more than 300 patients, Lanterman is one of the largest elder caregivers in Los Angeles County.

Department of Developmental Services officials provided California Watch with the case numbers for six incidents they claim had been forwarded to prosecutors in Los Angeles County. But the district attorney’s office said the case numbers didn’t match anything in their records.

Even cases of brazenly documented abuse have ended without criminal charges.

In 2005, a caregiver at Lanterman took a cell phone picture of her co-worker with his hands wrapped around the neck of a 48-year-old male patient with mental disabilities.

In the photo, the patient’s “facial expression showed that he was not enjoying the action,” a state Department of Public Health inspector wrote in a report about the incident.

The photograph, taken May 5, 2005, was e-mailed to the phones of multiple Lanterman employees – itself a violation of patient privacy laws. Another caregiver witnessed the choking and anonymously reported it a week later in a letter to public health officials and Lanterman administrators.

But the Office of Protective Services did not arrest the employees involved or forward the case to prosecutors. Inspection records don’t say whether the caregivers were reprimanded or fired, but Lanterman itself was fined $800 by the Department of Public Health.

 

California Watch

 

Related articles

• Police to revamp mentally ill training (theage.com.au)
• Developmental Disabilities in the News: Professor Defies Odds to ... (disabilitiesnews.blogspot.com)

A Shift From Nursing Homes to Managed Care at Home

Lillian Johnson, seated, prepares for a ride home from the New York Archdiocese's ArchCare PACE Center in Harlem, an alternative to a nursing home.

Faced with soaring health care costs and shrinking Medicare and Medicaid financing, nursing home operators are closing some facilities and embracing an emerging model of care that allows many elderly patients to remain in their homes and still receive the medical and social services available in institutions.

The rapid expansion of this new type of care comes at a time when health care experts argue that for many aged patients, the nursing home model is no longer financially viable or medically justified.

In the newer model, a team of doctors, social workers, physical and occupational therapists and other specialists provides managed care for individual patients at home, at adult day-care centers and in visits to specialists. Studies suggest that it can be less expensive than traditional nursing homes while providing better medical outcomes.

The number of such programs has expanded rapidly, growing from 42 programs in 22 states in 2007 to 84 in 29 states today. In New York City, a program run by a division of CenterLight Health System, formerly known as the Beth Abraham Family of Health Services, has over 2,500 participants at 12 sites in the metropolitan area.

“It used to be that if you needed some kind of long-term care, the only way you could get that service was in a nursing home, with 24-hour nursing care,” said Jason A. Helgerson, the Medicaid director for New York State. “That meant we were institutionalizing service for people, many of whom didn’t need 24-hour nursing care. If a person can get a service like home health care or Meals on Wheels, they can stay in an apartment and thrive in that environment, and it’s a lower cost to taxpayers.”

The recent influx of adult day-care centers and other managed care plans for the frail elderly is being driven by financial constraints as President Obama and Congressional leaders seek hundreds of billions of dollars in savings in Medicare and Medicaid. Nursing homes, which tend to rely heavily on Medicare and Medicaid dollars, are facing enormous financial pressure — Mr. Obama’s proposed budget includes a $56 billion Medicare cut over 10 years achieved by restricting payments to nursing homes and other long-term care providers.

Nationally, the number of nursing homes has declined by nearly 350 in the past six years, according to the American Health Care Association. In New York, the number of nursing homes declined to 634 this January from 649 in October 2007, and the number of beds to 116,514 from 119,691.

Over the next three years, New York State plans to shift 70,000 to 80,000 people who need more than 120 days of Medicaid-reimbursed long-term care services and are not in nursing homes into managed care models, Mr. Helgerson said.

The move away from nursing homes was highlighted on Thursday when Cardinal Timothy M. Dolan announced that the Archdiocese of New York, one of the state’s largest providers of nursing home care, is selling two of its seven nursing homes and opening or planning to open seven new adult day-care centers over the next three years.

“Seniors and others who have chronic health needs should not have to give up their homes and independence just to get the medical care and other attention they need to live safely and comfortably,” Cardinal Dolan said in a statement before he opened a 250-patient program at Saint Vincent de Paul Catholic Healthcare Center in the South Bronx.

These new adult day-care centers, known around the nation by the acronym PACE — Program of All-Inclusive Care for the Elderly — provide almost all the services a nursing home might, including periodic examinations by doctors and nurses, daytime social activities like sing-alongs and lectures, physical and occupational therapy and two or three daily meals. All the participants are considered eligible for nursing homes because they cannot perform two or more essential activities on their own like bathing, dressing and going to the toilet. But they get to sleep in their own beds at night, often with a home health care aide or relative nearby.

The nonprofit groups that operate them receive a fixed monthly fee for each participant and manage their entire care, including visits to specialists, hospitalizations, home care and even placement in a nursing home. Because Medicare and Medicaid pay set fees instead of paying for specific procedures, center operators are motivated to provide preventive care to avoid costly hospitalizations or nursing home care.

Some elderly people, however, spurn PACE programs because under managed care, they would have to switch their physicians to those at the PACE center or in its network.

Most elderly people want to live out their lives at home, a desire evident in interviews in the PACE center the archdiocese opened in 2009 in Harlem, which has a staff of three doctors and is visited regularly by a dentist, a podiatrist and a psychiatrist.

Edna Blandon, 74, a diabetic weakened on her left side by a stroke who relies on a wheelchair, is transported by specialized van to the Harlem PACE center three days a week and appreciates that it provides not only a home care attendant but sends a nurse every two weeks to change pills in her pillbox and load a 14-day supply of insulin into syringes that she will inject.

“My spirits would drop if I went to a nursing home,” she said. “I love the fact that I can go home at night. There’s no place like home. I can sit down, look at the TV and go to bed when I want.”

James Harper, 70, a retired bank employee who spent 10 months at the archdiocese’s Kateri Residence, a nursing home on the Upper West Side, after a stroke paralyzed his right side, enjoys yoga breathing classes and discussions about black history. Yet he gets to spend nights and weekends with his wife, Albertene, and daughter, Traci, both of whom work during the day and are not around to care for him.

“This way I’m around people,” he said.

Dr. Fredrick T. Sherman, the Harlem PACE medical director, said that a 2009 study showed that PACE programs reduce lengths of stays in hospitals and delay assignments to nursing homes.

The archdiocese, whose new centers will serve a total of 1,500 people, receives an average of $4,000 a month from Medicaid for each participant and $3,300 from Medicare. By comparison, said Scott LaRue, the chief executive of ArchCare, the archdiocesan health care network, a month of nursing home care can cost the government $9,000.

Ultimately, the archdiocese hopes that half of its elderly clients will be served in community settings rather than in nursing homes, which currently serve about 90 percent of the archdiocese’s clients. For-profit companies have not yet moved into the managed care market, in part because of uncertainties about reimbursement formulas and the risks of taking on a nursing home population.

The PACE population tends to be younger than that at nursing homes, which raises the question of whether many PACE clients would really need nursing homes without PACE. Dr. Sherman replies to such skepticism by saying that his clients “need that level of service — the question is where they’re going to get it.”

Without PACE, he said, “they’re going to end up in nursing homes.”

NY Times

Neurostimulation enables paralyzed teen to walk again

Visit msnbc.com for breaking news, world news, and news about the economy

 

 A rare spinal cord injury left 18-year-old surfer Kristen Adlhoch paralyzed, but thanks to special neurostimulation braces, she is walking again.

 

TODAY SHOW

 

 

Related articles

• Spinal Modulation Pain Management System Gets EU Green Light (medgadget.com)
• FCC grants radio spectrum to muscle-stimulating wireless devices for paralysis patients (engadget.com)

LA Times article of artist Beverly Mclver's HBO Documentary- RAISING RENEE

WHEN she left North Carolina 23 years ago, Beverly McIver never imagined returning. Feisty, talented and ambitious, Ms. McIver was more than eager to shake off the warm clinches of her family and the chilly, intractable racism of the South.

And in her lush, narrative paintings — for which she has gathered, at midcareer, an impressive array of fellowships, residencies, solo shows and awards — she has never stopped exploring those themes. Portraits of herself in blackface and a clown’s wig show her kinship with artists like Cindy Sherman; in her “laundry” paintings, her mother and her mentally disabled older sister, Renee, hang wash on a clothesline, lyrical compositions that recall the work of Millet and other 19th-century realists.

But in 2007, Ms. McIver, now 49, was lured from a tenured position at Arizona State University by North Carolina Central University, the historically black university where she had learned to paint. By then, her mother had died of cancer and left Ms. McIver with the care of Renee, a responsibility she assumed just as her career was taking off.

“Raising Renee,” a documentary that will be shown on Feb. 22 on HBO, follows the sisters for six years, from Ms. McIver’s first New York City solo gallery show in 2003 to the day Renee, now 52, wakes up in her own apartment, a rather miraculous turn of events.

This happy ending for both sisters could not have been foretold by Beverly, who initially cringed at the thought of making a home back in North Carolina. In the film, she says drily, “I’m not here an hour before someone reminds me that I’m black, reminds me I’m in the South and a second-class citizen.”

As for caring for her sister, she protests, “I can hardly take care of my cats.”

The movie takes its tone from Ms. McIver, who is a wry, frank narrator with a comedian’s timing. She and Jeanne Jordan, who made the film with her husband, Steven Ascher, met in 2002 at the Radcliffe Institute for Advanced Study, to which they had been awarded fellowships. Ms. Jordan was intrigued by Ms. McIver’s paintings, which she found cinematic, “like movie stills,” she said, and by her complicated personal history.

MS. McIVER grew up in Greensboro, N.C., a city with a grim racial past. Her mother, Ethel, was a maid, a devout Baptist and a single mother, raising three daughters (Beverly, Renee and Roni, the middle sister) in Morningside Homes, a housing project that has been torn down. Renee, who was born mentally disabled and with epilepsy, was a violent child, particularly during adolescence, when she once threw Beverly down the stairs

   

When Beverly turned 16, her mother dropped this bomb: “I have something to tell you,” she said. “Your father is at the door.”

“It was never fully explained,” Ms. McIver said. “But it appears that while my mother was in this bad marriage, she and my father, who was a cab driver, had an affair.”

Ms. McIver will protest time and again that she is a lousy caretaker, but the film reveals otherwise. Despite the complexities of her relationships, she takes them on with gusto and humor. Her biological father, who maintained only the most tenuous connection with her when she was young, is one of many people she now keeps a watchful, warm eye on. A few years ago, as a way of explaining what she did for a living, she made a portrait for him. When he learned that people pay tens of thousands of dollars for her work, he put it in the closet.

“He thinks it’s safer there,” Ms. McIver said, shaking her head.

When Renee first moved in with her, Ms. McIver was still living in Arizona. Now a gentle adult with the interests of a very young third grader, Renee embraced her new life. She loved the way her sister outfitted her room to her taste, in pink and purple everything. She loved shopping for a new wardrobe, shedding “the church lady clothes,” as Ms. McIver put it, for bright T-shirts and pants.

The film chronicles Ms. McIver's life with, and without, her mentally disabled sister, Renee.

 

But Ms. McIver, a successful, single artist and professor, was overwhelmed by her charge. “Feeling responsible for Renee would consume me,” she said. “What would she have for dinner, and what would she have for lunch and were her clothes ready? My idea of dinner, until that point, was maybe hummus and some pita bread.”

Still, she realized there was an opportunity for Renee to gain her independence. “I planted the seed of her someday living alone,” Ms. McIver said. “I told her, ‘If something ever happens to me, you’ll have your own place.’ Renee is aware enough that she is vulnerable, and doesn’t have a say in where she lives and who she lives with. I wanted to give her that peace of mind.”

Ms. McIver’s friends and Ms. Jordan had another insight. “They said that Renee is there to teach me what it feels like to be adored, so I can find a man who adores me,” Ms. McIver said. “Jeanne said it’s for me to get used to saying, ‘I love you, too!’"

Once the filming was completed, Ms. Jordan and her husband waited a year before releasing the movie. They knew it would be a cheat if their happy ending unraveled — if Renee, “all grown up,” as she puts it, in her new, bright apartment in Greensboro, had to move back in with Ms. McIver, who is thrilled to be living alone in her new house, in Durham.

But the ending did not unravel. And on her birthday last December, Ms. McIver shed another weight and had breast-reduction surgery, something she had been dreaming of for years. On a recent afternoon, standing in her downstairs bedroom, she demonstrated the slope-shouldered, cross-armed pose she had hidden behind since adolescence.

“I couldn’t do it with Renee,” she said of the surgery. “You need too much care. But now I can focus on me. Look at my new bra, isn’t it beautiful? It has jewelry on it!” Ms. McIver dangled a bright blue lace number with fetching bedazzlements.

The week before, Ms. Jordan and Ms. McIver had given a fund-raising speech for the Radcliffe Fellowship at the Harvard Club in New York. “Because we are the poster children of what can happen there,” Ms. McIver said.

Ms. Jordan recalled thinking, “I’ll eat my hat if Beverly doesn’t bring up the surgery.”

“Sure enough,” she continued, “I’m looking out at all these wealthy donors, and someone says to Beverly, ‘What are you doing now?’ She looked at me, and then says, ‘I know I shouldn’t tell you this, but several weeks ago I had breast-reduction surgery, and I’m fascinated by the artistry of it.’ ”

Stunned silence.

In fact, Ms. McIver’s new paintings “are all about my new breasts,” she told a reporter later.

“They are about coming out.”

POST-SURGERY, Ms. McIver has been sleeping downstairs in her new house, which has three bedrooms and more than 3,000 square feet. “Sometimes I sleep in different beds, just because I can,” she said. “I am so grateful to be here.”

She showed off the wide, open spaces: the glassy, double-height living room, the huge kitchen, the studio in the basement. It’s the archetype of a suburban family house, which irritates some friends “who think I have no business living alone in such a big house,” she said.

Then again, Ms. McIver is lucky in real estate. This clapboard contemporary, built in the mid-1990s, was on the market in 2007 for $579,000; she bought it for $475,000, the exact amount a bank had approved for her. “Just offer them $475,000,” she told her broker. “You never know.”

But after she and Renee moved to Durham, it was another two years before Renee had her own place. “I was at the end of my rope,” Ms. McIver said. “It was time.”

Ms. McIver, who paints at night, tried to teach Renee not to interrupt her when she was working at home. Renee, who is extremely social, struggled with that. Ms. McIver also worried when Renee was home by herself. When she had been living with her mother, Renee had opened the door to a man who beat and raped her. Ms. McIver urged her sister to ignore the doorbell. “Just let it ring,” she told her.

Finally, in 2009, a disabled cousin moved into a small housing complex for the disabled and elderly around the corner from the Greensboro school where their sister, Roni Bryant, is the assistant principal. Ms. McIver, ever tenacious, found Renee an apartment there and decorated it in Renee’s favorite colors. Roni’s husband, Hobson, now does Renee’s grocery shopping and takes her to church. And every day, a bus picks her up and takes her to a program that teaches her life skills, like how to pay bills and cook. Such an intricate system of support for someone like Renee is rare and precious.

	A Hello Kitty figurine on the stove in Renee's apartment in Greensboro.

The other day, Renee wore an Obama T-shirt and bright purple pants. There were pink linens on her bed and pink throw pillows. Even the DVD player and the remote were pink — “Hello Kitty,” she confided.

She said she was happy to be back in Greensboro. Speaking slowly and carefully, she ticked off the best parts.

“Starting over with my family again,” Renee said. “Getting and meeting more new friends. How to be responsible with myself.”

The only downside, she said, is the stove, which is not her favorite appliance.

“Isn’t she great?” Ms. McIver said, beaming. Then she got back in her car and drove home.

 RAISING RENEE PREMIERE on HBO 2
February 22 at 8:00 pm!

Rasing Renee website

HBO

L.A. TIMES

Related articles

• HBO2 documentary Raising Renee debuts Feb. 22 (therogersrevue.wordpress.com)
• HBO 2012 schedule of documentaries starting with Paradise Lost (examiner.com)

The NHS must accelerate its reforms on treating learning disabled patients

Specialist nurses and regular health checks could help improve care for people with learning disabilities

 

 

When Mencap published its Death by Indifference report in 2007 it sent shockwaves through the health sector. The study contained damning evidence that people with a learning disability were dying unnecessarily due to institutional discrimination in the NHS. Such was the strength of the report it triggered an independent inquiry and an investigation by the parliamentary and health service ombudsman.

Despite these welcome initiatives, five years on from the publication we continue to hear heartbreaking stories of unnecessary pain and death. These cases form the basis of our report published on Wednesday , Death by Indifference – 74 Cases and Counting, which looks at progress that has been made in the NHS. Sadly, it finds that the NHS has still not got to grips with treating people with a learning disability and is putting the lives of patients at risk.

Prejudice, ignorance and indifferenceas well as failure to abide by disability discrimination laws still feature too frequently in the treatment of patients with a learning disability. This is illustrated by the case of Alan MacDonald, who died suddenly in Lister hospital, Hertfordshire, in 2009 after being admitted with stomach cramps. From the time MacDonald was admitted, his family felt that they had "to beg" staff to treat him, only to be met with what they described as "hostility". In a society that prides itself on its universal healthcare system, such treatment is incomprehensible.

We know that regular health checks for people with a learning disability, training for healthcare staff and the appointment of specialist nurses greatly improve health outcomes. Indeed, successive governments have accepted the recommendations of the independent inquiry, which called for these measures. But, as our report shows, efforts to implement them have been slow and in some cases non-existent. Policy may have been changed but practice must follow.

For the most part, health professionals do an incredible job and want the best for each patient – we take heart that more than 200 healthcare organisations have signed up to Mencap's Getting it Right charter – but where progress has been made, it has been patchy or has come about as the result of the avoidable death of a learning disabled patient.

How many people must die before the service takes this issue seriously? At a time when the NHS is going through changes there's a risk that the progress made will be lost, and the health needs and human rights of people with a learning disability left unheaded.

74 Deaths and Counting (ManCap)

 

The Gardian

LAPD & DOT Crack down on disabled-driver placards abusers

Officers with LADOT determine that a motorist using a disabled-driver placard to park free on a downtown Los Angeles street was not eligile to use the card. Officers confiscated the placard, and the driver will owe a hefty fine.

As the scoundrels arrived to look for parking, little did the unsuspecting offenders of decency know that an undercover sting had been set up to ruin their day.

I'd written two columns on the fraudulent use of disabled-driver placards in downtown Los Angeles, and the city's Department of Transportation was swooping in for a crackdown. My only regret was that department chief Jaime de la Vega claimed he had other things to do, so there went my chance of riding shotgun with him in his Hummer.

We gathered at 6:30 a.m. Friday. My fellow crime busters included DOT officials and undercover officers and Councilman Dennis Zine, who had arranged for an LAPD unit to join the operation. Zine, a former cop who's running for city controller, was eager to bust anyone who'd fake a disability to park free all day, robbing the city of badly needed revenue.

On Friday, the action was light at 4th and Hill streets. Having run my own stakeouts, I recommended that we move the operation to Grand Avenue between 2nd and 4th streets, and let me tell you something: I ought to be in line for a consulting contract. It was easy pickings up there.

Two undercover cops from DOT worked the street while Zine and I, along with the DOT suits, held back. We tried to look inconspicuous, but with Zine, it's like you're out there with Kojak, and the red jacket he was wearing wasn't exactly camouflage. Fortunately, even Barney Fife could have handled this job.

Right around 8 a.m., a woman in a black Honda Civic pulled into a metered space on the east side of Grand, near the Museum of Contemporary Art, and hung a blue placard. You never know for sure who's cheating, because not all disabilities are obvious. But when DOT sergeants Manny Garcia and Jessie Dyar ran a check, they learned that the placard was issued to someone other than the driver.

"It's my aunt's," the driver told me, claiming she had dropped her off at court.

It's OK to use a disabled person's placard to drop off or pick up that person and park within "reasonable proximity."

But was this driver parking for the day to go to work?

"No comment," said the woman, who was in her late 30s.

I asked how she could defend taking a space that someone on crutches, or in a wheelchair, might need. She looked past me as if I wasn't there. But she can't look past the $353 citation written by LADOT for parking the vehicle illegally, and another one written by the LAPD officers for using a placard issued to someone else. The latter fine starts at $250 and could go as high as $1,000. A judge has the option of tacking on six months in jail. An LADOT officer also confiscated her placard.

But before the ink was dry on the citations, another bust had begun across the street.

Two women had parked at consecutive meters and hung placards. They were both walking fine, no apparent disabilities. The first woman had a placard that had been issued to her, so she was in the clear legally, if not necessarily ethically. The second woman, driving a brand-new black Camaro, claimed she and her sister each have placards, and she happened to be in a car with her sister's placard.

Sgt. Dyar ran a check and said there was no record of the driver having any placard issued to her. DOT confiscated the placard and wrote her a $353 citation, and LAPD senior lead officers Karen Owens and Mike Fernandez wrote her the ticket with the $250-$1,000 fine.

The cited drivers looked more indignant than remorseful. Zine said they looked like "they'd been caught with their hand in the cookie jar." He said he plans to introduce a City Council motion calling for the city's legislative committee to explore ways to crack down on this kind of nonsense.

State legislation would be required to allow California cities to establish their own rules on placards. In other states, some cities have begun charging disabled drivers for parking at meters, thereby discouraging fraud. And it seems at least a no-brainer to hold someone with a placard to the same time constraints as any other person parking. Zine said he would consider all these things, especially if they could mean more spaces for the truly disabled. LADOT spokesman Bruce Gillman said that in Washington, D.C., disabled drivers have to pay at designated meters but can park for double the time as the non-disabled.

We could have filled a paddy wagon on Grand, but we moved to the 600 block of Hill Street, where the DOT had fielded a complaint about a serial placard abuser who ties up spaces that could be used by shoppers.

Just after 9 a.m., a guy in a big black Mercedes pulled into a metered space near the St. Vincent Jewelry Center. He looked around cautiously before placing a disabled placard on his dash. The coppers nailed him when he stepped onto the sidewalk, insisting it was his wife's placard.

He told me this was "the first time" he'd ever used it himself.

Do I look that stupid?

As the tickets were written, he sulked around with a "how dare you" look, as if we were the bad guys. Twice, he came over and stood 12 inches away from me, as if we were in a stare-down.

"Are you happy?" he asked.

No, I told him. I'm sad there are people like him in the world.

And I left him with something to think about:

"You could have parked for $10 today," I said. "Now it may end up costing you $1,000."

LA TIMES

Related articles

• Police Hit Loop Targeting Disabled Placard Scofflaws (chicago.cbslocal.com)
• Handicap Parking Invention Relieves Pain, Frustration (prweb.com)
• Secretary Of State White: Ending Free Disabled Parking Is A Bad Idea (chicago.cbslocal.com)

Book-The Story of Beautiful Girl

 

 

Book Description

It is 1968. Lynnie, a young white woman with a developmental disability, and Homan, an African American deaf man, are locked away in an institution, the School for the Incurable and Feebleminded, and have been left to languish, forgotten. Deeply in love, they escape, and find refuge in the farmhouse of Martha, a retired schoolteacher and widow. But the couple is not alone-Lynnie has just given birth to a baby girl. When the authorities catch up to them that same night, Homan escapes into the darkness, and Lynnie is caught. But before she is forced back into the institution, she whispers two words to Martha: "Hide her." And so begins the 40-year epic journey of Lynnie, Homan, Martha, and baby Julia-lives divided by seemingly insurmountable obstacles, yet drawn together by a secret pact and extraordinary love.

Exclusive Essay from Rachel Simon

When The Story of Beautiful Girl came out, I kept getting asked two questions. Why was I drawn to writing disability-themed literature? And was it hard to write from the point of view of characters with disabilities?

My answer to the first question begins with this basic fact: for one month every year, I am a twin.

My sister Beth, who has an intellectual disability, was born eleven months after me. So every year when I visit her for her birthday, the first thing we both say is, "Now we’re twins!" And for the next thirty days, as she gleefully moves through her days wearing the Tweety Bird shirts and using the Scooby Doo stickers I bought for her big celebration, we are indeed twins. Then my birthday rolls around, and when I visit her for that admittedly more secondary occasion, and she thrusts dozens of handmade cards at me, all of which express her happiness at my coming to see her, the first thing we both say is, "Now we’re not twins."

As with any siblings who are so close in age, we’ve shared a lot: parents, a brother and sister, a challenging family history, bedrooms, opinions, dreams, tears, jokes, anxieties, secrets, unspoken understandings, and sideways glances. So I have a reasonably good sense of how my sister feels, what she thinks, who she cares about, and why she does what she does.

Of course, there are additional layers to our relationship because of her disability. I feel a sense of responsibility toward her and she feels a level of trust in me. We’ve both always known that, whenever necessary, I will act as a go-between: I will explain to her the things she doesn’t understand about the world, and I will explain to the world the things it doesn’t understand about her.

At the same time, since she is a person with a disability, I’ve spent my life noticing--and being annoyed at--how so much of the world has got it all wrong when it comes to my sister and others like her. How she gets ignored by waitresses, snickered at by teenagers, patronized by people who assume she’s helpless, underestimated by people who assume she’s angelic. In addition, I’ve pondered many of the deepest issues about the mind. What is universal about intelligence? About sorrow and longing? About pleasure and love? On top of all this, I’ve long wondered: Why does so much of the public just not get it? And how, given that some people like my sister never get seen or acknowledged or heard by the world, might that ever change?

In 2002, I tried to do what I could to answer those thoughts. I wrote a memoir about my relationship with Beth, Riding The Bus With My Sister, which is about both her present-day passion of riding city buses and our lives as siblings from birth to middle age. The book, which was also adapted for a Hallmark Hall of Fame movie by the same name, led to my getting asked to give talks around the country. At every talk, I met more and more people with disabilities, their family members, and the professionals who work with them. They told me their stories, and I started to feel a new urge. I wanted to do whatever I could to give voice to those who had never been heard.

I realized I was in an unusual position to take on that responsibility. As a family member, I wouldn’t get bogged down by cliches and stereotypes. As someone who’d already published two books of fiction before Riding The Bus With My Sister, I wouldn’t have to stick with nonfiction, nor was I daunted by the idea of a novel. As a sister who’d stood up for Beth since the day I was conscious of my own existence, I felt a sense of mission. And as a once-a-year twin, I had developed the skill of being a go-between.

This gets me to the second question. Was it hard to write The Story of Beautiful Girl through the eyes of characters with disabilities?

I wish I could say it took a huge amount of effort. But there’s another word that’s synonymous with being a go-between: being a translator. I’ve spent my life translating the world into terms my sister could comprehend--and translating my sister into terms the world could comprehend.

So when I sat down to write the characters of Beautiful Girl and Number Forty-Two, I just did what I’ve always done. I wrote about the world’s rules and injustices and rewards and irrationalities as those characters would perceive them. And I wrote about their wonderings and yearnings and motivations and joys in ways that readers would understand.

Neither character is like my sister. And both go through adversity and anguish the likes of which my sister has never seen. But I wouldn’t say that writing their experiences was hard for me.

I would say, instead, that it was heart-opening and soul-deepening.

I would say, instead, that it was fun.

From Publishers Weekly

In this enthralling love story, Lynnie, a young white developmentally disabled woman with limited speech, and Homan, a deaf African-American man, meet at the Pennsylvania State School for the Incurable and Feebleminded in the late 1960s. Despite strict rules, poor conditions, an abusive staff, and the couple's lack of language, Lynnie and Homan share tender moments. After their escape, a few days of freedom not only enables the secretly pregnant Lynnie to give birth outside the walls of the corrupt institution, it also secures the couple's admiration for one another. Fears of discovery force them to leave the baby in the hands of a nurturing widow, Martha Zimmer. Soon after, the school's staff apprehend Lynnie, while Homan flees. Although their stories diverge and unfold independently of one another, memories of their short time together sustain them for more than 40 years as they develop the confidence to eventually parent, learn to sign and speak, and finally, reunite. Simon (Riding the Bus with My Sister) who grew up with a developmentally disabled sister, has written an enormously affecting read, and provided sensitive insight into a complex world often dismissed by the "abled."

AMAZON.COM

 

Unified Teams Take Special Olympics Approach to School Sports

Shane Powell (41) and members of the Grandview High School unified basketball team in Aurora, Colo. 

Not long ago, high school was a lonesome place for Shane Powell. A quiet, gangly 17-year-old, he could not help noticing the whispers in the hallways when he walked past, classmates poking fun at him.

“I was picked on,” said Powell, who is cognitively delayed and speaks in short, soft bursts. “I felt very sad.”

These days, Powell is a junior basketball star at Grandview, a sprawling public high school of 2,600 students near Denver, and he prefers to be called Big Shane, a nickname reinforced by his 6-foot-4 beanpole frame.

Through a collaboration with the Special Olympics, Powell and nearly two dozen other special education students participate on basketball and cheerleading squads at Grandview. They not only take part in school competitions, but also team up with general education students, called partner athletes.

At Grandview, these unified teams are upending high school’s archetypal and often cruel social order. Largely invisible in the past, special education students now slap hands with lettermen in the hallways, chat with new friends and live a high school existence that “feels normal,” said one parent, Kelly Shearer.

Kurt Wollenweber, Grandview’s principal, said: “Unified has transformed the culture of this school. It was almost as if these kids weren’t noticed before we began doing this. I don’t think anyone realized how powerful they are.”

Born of the idea that athletic events can be especially transformative when they include individuals who have special needs alongside those who do not, unified programs have existed about two decades.

In 2008, with money from the federal Department of Education, the Special Olympics began putting the programs into schools. More than 2,000 schools in 42 states have unified athletic programs, with varying levels of intensity.

“We know that the interaction that happens in unified sports is the point at which a change in attitude happens for all students involved,” said Andrea Cahn, the senior director of Project Unify for the Special Olympics national office in Washington.

 

“Our athletes have an unconditional appreciation for other people. They persevere even in the face of being bullied and teased. We can pull back the veil of the unknown and make people real.”

With unified basketball, one of the more common sports played at schools, modified rules require at least three players with cognitive disabilities for each team on the court. The remaining players can be partner athletes, who typically do not take many shots.

Last school year, Grandview’s first using unified programs, the basketball team went 8-1 and won the state Special Olympics championship. The games, which are usually played between the junior varsity and varsity contests, crackle with the intensity of traditional high school sports. They regularly outdraw them, too.

At a recent game against the rival Overland’s unified team, a packed crowd of students, parents and faculty members roared for both sides, seeming not to care about the wild shots hoisted high off the backboard, traveling violations or which team scored.

Cory Chandler, Grandview’s young coach, who also coaches freshman baseball and football at Grandview, pumped his fist after the freshman Mathew Philippi sank his first basket of the season.

Philippi, who is autistic and barely speaks, threw his hands up in shock, grinned sheepishly and shuffled toward the bench before a partner athlete coaxed him down the floor to play defense.

“It’s unlike any coaching experience I’ve ever had,” Chandler said. “I’ve never got teary-eyed during baseball or football. With this, I fight back tears during every game.”

The effect, at least at Grandview, is equally profound for partner athletes, who in many cases are popular overachievers, handpicked by coaches and special education teachers.

“These guys are not my teammates anymore; they are more my friends,” said Payton Soicher, a senior baseball player who also plays unified basketball.

In Colorado, whose state Special Olympics organization has been at the forefront of the unify movement, the program is also growing. This academic year, 20 high schools fielded unified programs, with 325 special education students participating. Last school year 11 schools and 155 special education students were involved. The number of partner athletes has also risen substantially.

Jon Hoerl, an assistant principal at Overland, helped start the program at Grandview when he was its athletic director.

“The kids get to wear the same uniforms, the same warm-ups,” Hoerl said. “We announce the lineups. The whole idea is to get them the mainstream experience of a high school athlete. They just want to be included.”.

Georgi McFail, a Grandview sophomore, has Apert syndrome, a genetic disease characterized by severe physical deformities. She was teased mercilessly in middle school, said Shearer, her mother.

“Just a lot of tears,” Shearer recalled.

A Grandview special education teacher told them about the unified spirit squad, and with some nudging, McFail joined.

“Her confidence has just soared,” Shearer said. “Now she says, ‘I’m going to be a cheerleader all through high school.’ She doesn’t feel so different anymore.”

At the basketball game against Overland, McFail, in her blue-and-white uniform, cheered quietly, keeping up with all the steps. She threw her hands, which have fused bones and which she used to hide in her pockets, high in the air.

“I get to go cheer for the games, and the varsity cheerleaders have become my good friends,” she said.

They had plenty to cheer about, as the teams traded baskets during a close second half. Michael Bush, a senior with cerebral palsy who had fallen in with a rough crowd before joining the basketball team, stared at the ceiling after missing a layup. Seconds later, he hit a jump shot and implored the crowd to cheer.

Bush’s friend Big Shane Powell, though, was the star of the game, flying down the floor to make layup after layup. Chandler, the coach, recalled a time when Powell, who also has behavioral disorders, was filled with anger and once threw punches at him and another coach during practice.

After Grandview built a big lead during a recent game, Chandler pulled Powell aside.

“I told him, ‘I want you to be a partner athlete for the rest of the game,’ ” Chandler said.

Powell hustled back into the game, grabbed a rebound and handed the ball to an opposing player so he could make a shot, too.

 

New York Times/Sports

Obama To Disability Advocates: 'I've Got Your Back'

 

Some 150 disability advocates from across the country headed to the White House Friday for a day-long powwow with administration officials and they got a surprise visit — from the president himself.

The group of advocates included individuals with disabilities, their families and professionals affiliated with The Arc who were invited to meet with Obama administration officials.

The event was part of the White House Community Leaders Briefing Series, a weekly initiative designed to establish direct dialogue between local leaders and top federal officials.

President Barack Obama surprised the group by stepping in for a short, late-morning talk in the South Court Auditorium.

“I want you all to know that I’m going to keep fighting everyday for an America which lives up to our most basic values, not just for some, but for us all. But I need your help,” Obama told the group.

The president praised the advocates for speaking up last summer during a series of tough budget talks about the importance of Medicaid and said that continued advocacy of that kind is needed.

“People with disabilities deserve the chance to build a life for themselves in the communities where they choose to live,” Obama said, adding that he supports high education standards and employment opportunities for those with disabilities.

“I’ve got your back and I’m looking forward to working with you for many years to come,” he said.

In addition to Obama, the group also heard from top officials at the Justice Department and the Medicaid program, among others.

White house.Gov

Disability Scoop

Supply of Methotrexate,a Cancer & Rhumatoid Arthritis Drug, May Run Out Soon

Methotrexate is used to treat childhood leukemia and rheumatoid arthritis.

 

A crucial medicine to treat childhood leukemia is in such short supply that hospitals across the country may exhaust their stores within the next two weeks, leaving hundreds and perhaps thousands of children at risk of dying from a largely curable disease, federal officials and cancer doctors say. 

“This is dire,” said Valerie Jensen, associate director of the Food and Drug Administration’s drug shortages program. “Supplies are just not meeting demand.”

The drug is methotrexate, and the cancer it treats is known as acute lymphoblastic leukemia, or A.L.L., which most often strikes children ages 2 to 5. It is an unusually virulent cancer of white blood cells that are overproduced in bone marrow and invade other parts of the body.

The cancer commonly spreads to the lining of the spine and brain, and oncologists prevent this by injecting large quantities of preservative-free methotrexate directly into the spinal fluid. The preservative can cause paralysis when injected into the spinal column, so cannot be used for this disease. Methotrexate is also used to treat rheumatoid arthritis.

Ben Venue Laboratories was one of the nation’s largest suppliers of injectable preservative-free methotrexate, but the company voluntarily suspended operations at its plant in Bedford, Ohio, in November because of “significant manufacturing and quality concerns,” the company announced.

Since then, supplies of methotrexate have gradually dwindled to the point where oncologists now say they are fearful that shortfalls may occur at many hospitals within two weeks.

“This is a crisis that I hope the F.D.A.’s hard work can help to avert,” said Dr. Michael P. Link, president of the American Society of Clinical Oncology. “We have worked very hard to take what was an incurable disease and make it curable for 90 percent of the cases. But if we can’t get this drug anymore, that sets us back decades.”

Jackson Schwartz, 6, of Langhorne, Pa., received a diagnosis of A.L.L. in August after he complained of terrible stomach pains and spent much of his family’s vacation sleeping on the beach, said his father, Jon Schwartz. A doctor initially gave Jackson a diagnosis of constipation, but when the constipation medicine did not ease his symptoms, Jackson’s parents took him to Children’s Hospital of Philadelphia.

Within a day, doctors started Jackson on methotrexate, and the drug has been an essential part of his treatment ever since. Jackson is scheduled to have methotrexate injected into his spine weekly for the next eight weeks to ensure that his cancer does not return. If the hospital is unable to get more supplies, however, Jackson’s treatment and life may be in serious jeopardy, Mr. Schwartz said.

“It would be devastating if we can’t get this drug,” he said.

There are four other manufacturers of methotrexate in the United States, and they are trying to increase production, Ms. Jensen said. The F.D.A. is also seeking a foreign supplier to provide emergency imports until the approved domestic ones can meet demand, she said.

“We’re working on many fronts, and will keep this a priority,” Ms. Jensen said.

So far this year, at least 180 drugs that are crucial for treating childhood leukemia, breast and colon cancer, infections and other diseases have been declared in short supply — a record number. Prices for some have risen as much as eightyfold. President Obamaissued an executive order in October to help ease the problems.

“People are panicking” about the methotrexate shortage, said Erin Fox, manager of the drug information service at the University of Utah. “There isn’t a lot of hope that supplies will improve drastically over the next few weeks, which is why people are so worried.

NYT/HEALTH

Related articles

• Rock versus hard place (kaarinajointsinmotion.wordpress.com)
• Critical Shortage of Children's Leukemia Drug (abcnews.go.com)
• Combination Therapy for Rheumatoid Arthritis (webmd.com)