Already surrounded by machines that allow him, painstakingly, to communicate, the physicist Stephen Hawking last summer donned what looked like a rakish black headband that held a feather-light device the size of a small matchbox.Called the iBrain, this simple-looking contraption is part of an experiment that aims to allow Dr. Hawking — long paralyzed by amyotrophic lateral sclerosis, or Lou Gehrig’s disease — to communicate by merely thinking.
The iBrain is part of a new generation of portable neural devices and algorithms intended to monitor and diagnose conditions like sleep apnea, depression and autism. Invented by a team led by Philip Low, a 32-year-old neuroscientist who is chief executive of NeuroVigil, a company based in San Diego, the iBrain is gaining attention as a possible alternative to expensive sleep labs that use rubber and plastic caps riddled with dozens of electrodes and usually require a patient to stay overnight.
“The iBrain can collect data in real time in a person’s own bed, or when they’re watching TV, or doing just about anything,” Dr. Low said.
The device uses a single channel to pick up waves of electrical brain signals, which change with different activities and thoughts, or with the pathologies that accompany brain disorders.
About the Hawking experiment, he said, “The idea is to see if Stephen can use his mind to create a consistent and repeatable pattern that a computer can translate into, say, a word or letter or a command for a computer.”
The researchers traveled to Dr. Hawking’s offices in Cambridge, England, fitted him with the iBrain headband and asked him “to imagine that he was scrunching his right hand into a ball,” Dr. Low said. “Of course, he can’t actually move his hand, but the motor cortex in his brain can still issue the command and generate electrical waves in his brain.”
The algorithm, called Spears, was able to discern Dr. Hawking’s thoughts as signals, which were represented as a series of spikes on a grid.
“We wanted to see if there was any change in the signal,” Dr. Low said. “And in fact, we did see a change in the signal.” NeuroVigil plans to repeat the study in large populations of patients with A.L.S. and other neurodegenerative diseases.
These preliminary results come as Dr. Hawking’s ability to communicate diminishes as his disease progresses. The 70-year-old physicist, whose mind has produced crucial insights in theoretical physics as well as the best-seller “A Brief History of Time,” now needs several minutes to generate a simple message. He uses a pair of infrared glasses that picks up twitches in his cheek. His team in Cambridge, England, has dubbed this the “cheek switch.”
“Dr. Low and his company have done some outstanding work in this field,” Dr. Hawking said in a statement. “I am participating in this project in the hope that I can offer insights and practical advice to NeuroVigil. I wish to assist in research, encourage investment in this area, and, most importantly, to offer some future hope to people diagnosed with A.L.S. and other neurodegenerative conditions.”
The physicist has also worked with other inventors seeking to better elucidate his thoughts. Engineers at the semiconductor and computing giant Intel recently hooked up a customized computer to communicate with his cheek-reading infrared glasses, along with a voice synthesizer, a webcam for using Skype, and special monitors. Intel is developing new face-recognition software that can monitor subtle changes in expression and may help Dr. Hawking communicate more efficiently.
Scientists not connected with Dr. Low say they are encouraged by the iBrain’s potential. “Philip Low’s device is one of the best single-channel brain monitors out there,” said Ruth O’Hara, an associate professor of psychiatry and behavioral sciences at Stanford University Medical School. She plans to use the iBrain for autism studies. NeuroVigil has not said what the device will cost.
“I can’t speak to the veracity of his latest data,” which has not been published, Dr. O’Hara added, “but the preliminary data I have seen is compelling. It could be a significant contribution to the field as a window into brain architecture.”
Dr. Terry Heiman-Patterson, a neurologist and A.L.S. specialist at the Drexel University College of Medicine, said she was in discussions with NeuroVigil to use the device on A.L.S. patients, to see how they fared with it in comparison with instruments that use multiple channels and electrodes.
“Dr. Low is researching signals that look for intent, which is becoming very exciting because it looks like they may be able to do it — for Stephen Hawking and for others with A.L.S.,” Dr. Heiman-Patterson said.
“Patients want to be able to communicate beyond the yes or no with an eye blink. They want to send an e-mail, and turn off the light and, even more, to have a meaningful conversation.”
Monitors like the iBrain are also being used to assess whether experimental neurological drugs are working in clinical trials.
In 2009, NeuroVigil completed a deal with the drug giant Hoffmann-La Roche to test the iBrain. Neither company has released details of their early tests. NeuroVigil’s strategy, Dr. Low said, is to run clinical trials with Roche and other partners in industry and academia, and to seek approval from the Food and Drug Administration.
Other companies also make single-channel brain monitors, but unlike NeuroVigil they sell the devices and software directly to consumers online.
Zeo, for example, based in Massachusetts, concentrates on measuring sleep patterns through a smartphone app or a clock-radio device — available for $99 and $143, respectively. Emotiv Systems, in San Francisco, offers its Epoc headset for $299 plus a range of apps and add-ons that include neurofeedback, 3-D brain-mapping tools and games like Angry Birds, all using a combination of thoughts and facial muscle movements recorded by several electrodes that are in contact with a customer’s head.
“We have no plans to take an academic route,” said Zeo’s chief executive, Dave Dickinson, who added that his company’s customers had logged one million hours of sleep time. He would not say how many devices had been sold. Emotiv was founded in 2003 and has reportedly shipped 10,000 devices.
Dr. Low plans to team up again with Dr. Hawking this summer in Cambridge to present their initial data at a neuroscience meeting in early July. NeuroVigil will continue to work with Dr. Hawking and his team to refine their technology to decipher signals generated by Dr. Hawking’s thoughts. “At the moment I think my cheek switch is faster” than the brain-computer interface, Dr. Hawking said in an e-mail sent by an assistant, “ but should the position change I will try Philip Low’s system.”
Much work remains, however, including the integration of Dr. Hawking’s brain waves with the computers and devices that allow him to communicate.
“Wouldn’t it be wonderful,” Dr. Low said, “to have a mind like Stephen Hawking’s be able to communicate even a little bit better?”
Walking through the maze of sidewalks of the most populous city in the United States, the intense sound of the city traffic actually helps with cardinal direction. Yvonne listens as she waits to cross a busy intersection of Midtown Manhattan. Mobility specialist, Karen Kramer, always stays nearby explaining ways to navigate using sound and sense of direction.
The streets were quiet and dark except for the glare of an occasional streetlamp casting long shadows on the cracked pavement.
Yvonne Romero, 35, was on her way to the subway station several blocks from her home. She let her new long cane glide along the pavement in front of her, feeling for any change in the surface. The rolling ball at the tip of the cane passed on key information. Its length gave her just enough distance to avoid any mishaps. Tactile clues were essential. Coming to the curb, Ms. Romero stopped and stood still, a toe at the edge. She listened carefully for a lull in traffic. Ms. Romero was on her way, and she was not alone.
Over three years ago, Ms. Romero received a diagnosis of myopic degeneration in one eye; a year later, she developed glaucoma in the other eye and then myopic degeneration as well. Her condition worsened rapidly, until she could no longer make out the landscape as she traveled from her job in Manhattan to her home in Queens, especially after dark. She could no longer work. Frustrated and fearful, she would have to call family or friends to rescue her. She felt trapped and scared of losing her independence.
Finally, a co-worker suggested that she call Lighthouse International, a nonprofit organization for the visually impaired. At Lighthouse, she met Karen Kramer, a certified orientation and mobility specialist who has worked there for three decades. Her training in blindness is centered on how visual impairment can uniquely affect a person.
Almost invariably, people who develop visual impairment are initially scared, depressed or even embarrassed and refuse to go outside. As part of the rehabilitation program, Ms. Kramer guides them through acceptance, along a step-by-step path to more freedom and independence.
The winter months are the worst, with less daylight, not to mention the ice. As Ms. Romero walks through the city’s maze of sidewalks, the intense sound of traffic actually helps with cardinal direction. The cane in hand is an extension of the arm; it measures distance and offers protection from lurking obstacles: a bicycle chained to a street sign, construction scaffolding that was not there a day before.
With the sensory information comes self-confidence; the fear of approaching darkness or of becoming lost in the chaotic shadows of a crowded street lessens. To navigate through the busy sidewalks is a challenge even for the sighted. The sounds of sirens, jackhammers, motors waiting at a stoplight, tires pulling on the asphalt, a loud horn, a bicycle whizzing by, footsteps and passing conversations — all bounce off passing exteriors.
And other senses give clues: a blast of air-conditioning (an open doorway), the scent of pizza and sizzling hot dogs (must be the corner deli).
With sensory training, motor development and protective techniques like the use of the long cane, Ms. Kramer teaches Ms. Romero how to be safe, confident and efficient in her movements, step by step, a block at a time. And with time, the body adapts and other senses like hearing become more fine-tuned.
Each person has a different goal. Maybe it is just to make it to the mailbox and back. For many it is holding on to their independence and quality of life. A Lighthouse researcher projects from census data that one million people 45 and older in the greater New York area will have vision loss by 2015.
More than one in six Americans who work a full- or part-time job also report assisting with care for an elderly or disabled family member, relative, or friend.
Caregivers in the U.S. are diverse, with between 13% and 22% of American workers across major socioeconomic and demographic groups reporting that they fulfill a caregiver role.
These findings are from more than 200,000 surveys of employed Americans collected from January 2010 through June 2011 as part of the Gallup-Healthways Well-Being Index.
The 22% of middle-aged American workers who report being a caregiver is the highest of any group. The 13% of 18- to 29-year-olds who report the same is the lowest percentage across the various groups.
Blacks (21%) and Hispanics (20%) are also among the most likely to act as caregivers. Seventeen percent of white workers say they are caregivers.
Additionally, the lower income and less educated an American is, the more likely he or she is to be a caregiver. Twenty-one percent of Americans with an annual income of less than $36,000 report that they are caregivers compared with 15% of high-income ($90,000 or more per year) households. Similarly, 20% of Americans with a high school education or less fulfill a caregiver role versus 15% of college graduates and 16% of postgraduates.
The relatively lower percentages of high-income and highly-educated American caregivers may be a reflection of their ability to pay for professional care instead of having to fulfill the role themselves. Alternatively, the pattern may be due, at least in part, to those with higher incomes and higher levels of education tending to be younger.
Women are also slightly more likely than men to be caregivers -- 20% versus 16%, respectively.
Caregiving even affects seniors, with 16% of those aged 65 or older reporting they help care for an elderly or disabled family member, relative, or friend.
Bottom Line
More than 1 in 10 American workers in all major demographic and socioeconomic groups report that they are a caregiver. Caregiving is most prevalent among those who are middle-aged, low-income, black, Hispanic, or less educated.
Previous Gallup research has also already shown that caregivers have worse emotional and physical health compared to non-caregivers.
The next article in Gallup's series will show that caregiving also involves a significant investment of time and has a large impact on the workplace.
Community and employer support for the groups most likely to be fulfilling the role of caregiver in addition to their regular employment is likely to go a long way in improving the lives of not just those giving care, but also the lives of the people they care for.
Since mid-2008, billions of dollars have been slashed from programs that assist the poor, disabled and elderly. With the growing number of budget cuts, many of the aid recipients are getting hit on multiple fronts.
Despite being paralyzed from the shoulders down, Cynde Soto works part-time as an advocate for the disabled. But she fears that cuts in the In-Home Supportive Services program could force her to live in a nursing home.
Cynde Soto dreads the arrival of yet another benefit notice.
Her cash assistance has been cut four times in two years. State medical coverage is getting more expensive and no longer includes dental care or podiatry. And the in-home help she needs to take care of basics has been cut by about 20 minutes a day.
"That doesn't sound like a lot to people but … I'm a quadriplegic," said the 54-year-old Long Beach resident. "I can't even scratch my own nose."
Faced with years of recession-driven budget shortfalls, state lawmakers have made deep cuts to health and social services. The reductions, including a round that took effect this month, translate into sizable state savings but are sharply scaling back the safety net for California's most vulnerable residents: the elderly, the disabled and the poor.
Since mid-2008, more than $3 billion has been sliced from CalWorks, the state's welfare program for nearly 600,000 families with children, according to an analysis by the California Budget Project, a nonpartisan think tank. Another $3 billion has been cut from Medi-Cal, which provides health coverage to about 7.5 million Californians. And $4.6 billion has been cut from the Supplemental Security Income program, which supports nearly 1.3 million elderly and disabled people with little or no other income.
The cuts are reversing longstanding policy priorities and eroding the ability of public agencies to cope with a growing and aging population, advocates for low-income families say.
More than a billion dollars has been slashed for childcare, job training and other services that have helped hundreds of thousands of unemployed Californians reenter the workforce since a Clinton-era overhaul of the national welfare system imposed strict limits on benefits in 1996.
"We've gone back on the social compact of welfare reform," said Jean Ross, the California Budget Project's executive director.
Because those programs are stretched, welfare recipients withsmall children have not been required to participate in workforce preparation activities since 2009, increasing the number of exempt families by about 60,000, according to the County Welfare Directors Assn. of California.
"We have a lot of people we're telling to sit at home," said Michael Herald, a lobbyist for the Western Center on Law & Poverty. "We have fundamentally distorted the program in recent years because of the budget crisis."
Programs that help the poor, the elderly and the disabled stay healthy and independent have also been hit, undercutting local, state and federal efforts to keep the needy away from high-cost emergency rooms and institutionalized care.
"You've got the most vulnerable people in society getting hit with multiple cuts," said Frank Mecca, who heads the welfare directors association. "The same person gets hit over and over."
Soto is paralyzed from the shoulders down but does not let that keep her from doing advocacy work for people with disabilities at a Los Angeles independent living center. Using her mouth, she can operate a computer trackball and type numbers into a phone with a Popsicle stick. Several times a week, an aide helps her into an electric wheelchair so she can take the train to work.
Most of the $800 she earns a month goes toward work expenses, including paying someone to feed her lunch. She has relied on $723 a month in SSI to cover rent and utilities. In July, the state reduced its portion of the grant for single beneficiaries like Soto to the federal minimum, shaving $15 from her income.
The same month, the state began charging Medi-Cal beneficiaries copayments of $5 for prescriptions, $50 for emergency room visits and up to $200 for hospital stays. Soto has five prescriptions and went to the hospital four times last year. "That can really add up," she said.
But the cuts that worry her most are those to the In-Home Supportive Services program, which is paying for about nine hours of care a day. The two women who have been assisting Soto for more than a decade have told her they will have to look for other jobs if their hours are cut again. Without them, she fears she would have to go into a nursing home.
"Oh, my gosh. That's no way to live," she said. "I wouldn't be able to continue working. I would lose my quality of life.... I think I would rather just die."
State lawmakers said tough choices had to be made because of the size of the budget shortfalls, which totaled tens of billions of dollars. Health and human services account for about a quarter of state spending.
Last month, Gov. Jerry Brown signed another "painful budget" with deep cuts to services after losing a bid to win enough Republican votes to extend temporary taxes. Republicans said the taxes were a drag on the struggling state economy.
Among the cuts taking effect this month is an 8% reduction to CalWorks grants for low-income families. A single mother with two children living in Los Angeles County now receives a maximum $638 a month. If the mother has been on the program for more than four years, her portion of the grant will expire Aug. 1, and the family will be left with $516 a month. Previously, adults could receive cash aid for five years.
A Times analysis shows that the maximum monthly payment for a family of three has fallen to just 41% of the federal poverty level, compared to 55% before welfare reform began in 1996.
Margarita Romo, a 61-year-old widow from Pasadena with two children at home, says she is careful about money and reluctant to complain about benefits.
"That's not me," she said. "I find I always have enough for food, for rent." But the thought of managing with the latest cuts, she said, makes her "sick."
Romo's household income is being hit on two fronts: the reductions in CalWorks and SSI payments, which they receive to help care for a child with Down syndrome. Her older children say they want to help. But one has a child of her own; another has been looking for work for months; and the third had to drop out of college to pay a $2,000 emergency room bill because he had no insurance.
"We worry about her, all of us," said eldest daughter Marisol Salcedo, 23, who is studying engineering. "We give her money, but later on it's one of us borrowing $20."
Federal programs, including food stamps and job subsidies, helped ease the impact of some state cuts, said Caroline Danielson, a fellow at the Public Policy Institute of California. But the subsidies were temporary and food stamps can't be used for rent or utilities.
In addition to affecting beneficiaries, the state cuts are eroding the ability of counties to provide quality services, Mecca said. Even before the current recession, state funding to administer services was not keeping pace with inflation. Many counties have had to reduce staff even though caseloads are growing.
Mecca's association estimates the cuts have left the state short about 1,280 child welfare workers and 465 adult protective services workers, who investigate elder abuse and neglect.
"We know that we're not responding to all the calls that we should be," Mecca said. "You just can't."
The Los Angeles County Department of Public Social Services has lost about 1,500 employees since 2007, said Director Philip L. Browning.
"I don't see us ever getting back to the level of staff that we have had," Browning said. "I think we're going to have to do things smarter." Among adjustments the county has made is taking benefit applications online.
The Medi-Cal cuts and the elimination of state funding for community clinics have reduced access to healthcare, , said Anthony Wright, executive director of Health Access California, a consumer advocacy group.And he said the problem could get worse if the state wins a legal fight tocut reimbursement rates for Medi-Cal service providers.
The combined cuts have left many families hard-pressed to manage day-to-day needs.
Carlos Garbutt, a 45-year-old database manager fromRiverside, gets up before dawn to make breakfast for his 74-year-old mother, Nubia. He wakes her by gently stroking her cheek, then bathes and dresses her and carefully styles her curly dark hair. She has Alzheimer's and Parkinson's disease. Garbutt has been able to continue working because the state has paid for her to attend a day care program at Loma Linda University Medical Center and receive 126 hours a month of in-home care. But, the latest state budget could upset this arrangement.
The state's Adult Day Health Care program are being eliminated, and it is not clear what alternatives will be provided. That leaves Garbutt wondering whether he can continue to care for his mother at home.
"I want to be part of her journey," he said. Although his mother no longer speaks, he said, "I'm able to see when there is a glimmer of a smile or when she enjoys her meal... Those are gifts that will live on."
Obama administration officials are offering to cut tens of billions of dollars from Medicare and Medicaid in negotiations to reduce the federal budget deficit, but the depth of the cuts depends on whether Republicans are willing to accept any increases in tax revenues.
Administration officials and Republican negotiators say the money can be taken from health care providers like hospitals and nursing homes without directly imposing new costs on needy beneficiaries or radically restructuring either program.
Before the talks led by Vice President Joseph R. Biden Jr. broke off 12 days ago, negotiators said, they had reached substantial agreement on many cuts in the growth of Medicare, which provides care to people 65 and older, and Medicaid, which covers lower-income people. Those proposals are still on the table when Congress reconvenes this week, aides said, and are serious options that Democrats could accept in exchange for Republican concessions that raise revenues.
“Congress smells blood,” said William L. Minnix Jr., the chief lobbyist for nonprofit nursing homes.
Mr. Minnix, the president of a trade group known as LeadingAge, is urging nursing homes to “bombard your senators with the message that Medicaid cannot be cut by $100 billion” over 10 years, as President Obama and many Republican lawmakers have suggested.
A coalition of hospital lobbyists, worried about the direction of the budget talks, has begun a national advertising campaign to block further cuts in the two health care programs, which account for about 55 percent of hospital revenues. The hospitals have made a commitment to spend up to $1 million a week through August on television, print and online advertising.
“This is white-knuckle time for a lot of people,” said Bryant Hall, a health care lobbyist whose clients include drug and biotechnology companies. “Stakeholders and beneficiaries are anxiously watching the budget negotiations.”
They may have reason to be anxious.
Senator Charles E. Schumer of New York, the No. 3 Senate Democrat, said: “We are very willing to entertain savings in Medicare. Medicare gives very good health care very inefficiently.”
In return, Mr. Schumer said, Republicans should be willing to consider some additional revenue.
Negotiators said they were seriously considering cuts in Medicare payments to hospitals for uncollectible patient debt and the training of doctors; steps to eliminate Medicare “overpayments” to nursing homes; a reduction in the federal share of some Medicaid spending; and new restrictions on states’ ability to finance Medicaid by imposing taxes on
hospitals and other health care providers.
Medicare and Medicaid insure more than 100 million people, account for 23 percent of all federal spending and are likely to be an important part of any budget deal. Military spending, which accounts for about 20 percent of federal expenditures, is likely to be included as well.
Most Republicans have ruled out tax rate increases to reduce the deficit. Mr. Obama has rejected the idea of Medicare vouchers, Medicaid block grants or any rollback of the new health care law. But he and the Republicans say they still hope to find some common ground.
Mr. Obama has embraced the goal of reducing deficits by a total of $4 trillion over 12 years — an ambitious goal that suggests the size of any grand bargain.
In a speech in April, Mr. Obama offered to slow the growth of Medicare and Medicaid without cutting benefits. He said his ideas would save $340 billion over 10 years and a total of nearly $500 billion in the two programs by 2023. His numbers quickly became a starting point in the negotiations.
As for Medicaid, administration officials have indicated that they could accept savings of $100 billion or more over 10 years, much to the dismay of many House Democrats. The lawmakers say the cuts would impair access to care for the poor and shift costs to the states, which are facing a huge expansion in Medicaid eligibility and enrollment, scheduled to start in 2014 under the new health care law.
While insisting on new revenue at his news conference last week, Mr. Obama also said, “We’ll have to tackle entitlements,” adding that “health care cuts” need to be part of any deal.
Senator Joseph I. Lieberman, the Connecticut independent, described a fiscal and political imperative: “We can’t balance the budget without dealing with mandatory spending programs like Medicare. We can’t save Medicare as we know it. We can save Medicare only if we change it.”
The new health care law trimmed Medicare payments to most providers. Many states, in fiscal distress, are cutting Medicaid, which is financed jointly by the federal government and the states. If Congress and the president now make additional cuts, hospitals say, they will close some services and increase charges to patients with private insurance.
Hospital executives from around the country plan to visit Capitol Hill next week to deliver this message: “Cutting Medicare and Medicaid payments to hospitals will hurt the ones we love, especially the most vulnerable — children, seniors, the poor and disabled.”
Mr. Minnix, the lobbyist for nonprofit nursing homes, said: “The issue is not money. The issue is the effects on people, vulnerable people.”
The American Medical Association and AARP, the lobby for older Americans, have joined hospitals and nursing homes in fighting other proposals that would limit federal spending as a percentage of the gross domestic product. Members of Congress of both parties have introduced bills that would automatically cut spending across the board if such limits were about to be breached.
While details have yet to be decided, lawmakers and administration officials said they were seriously considering these proposals:
Gradually eliminate Medicare payments to hospitals for bad debts that result when beneficiaries fail to pay deductibles and co-payments. Medicare reimburses hospitals for 70 percent of such debts after the hospitals make reasonable efforts to collect the unpaidamounts.
Reduce Medicare payments to teaching hospitals for the costs of training doctors, caring for sicker patients and providing specialized services like trauma care and organ transplants. Medicare spends $9.5 billion a year for its share of those costs.
Reduce the federal share of payments to health care providers treating low-income people under Medicaid and the Children’s Health Insurance Program. The administration wants to establish a single “blended rate” for each state. The federal government now reimburses states at different rates for different groups of people and different services in the two programs.
Representative Henry A. Waxman of California, the senior Democrat on the Energy and Commerce Committee and an architect of Medicaid, said he was “very concerned” that this proposal would reduce the federal contribution to Medicaid and shift costs to states.
Richard Chestor, 50, leads Slick back to pasture after a ride at Medicine Horse Program in Boulder County. Chestor, diagnosed with autism more than 40 years ago, visits with Slick every other Friday.
Slick stood patiently in a Medicine Horse stall, letting the brush glide over his haunches, the motion at once calming the animal and producing a smile of pure boyish bliss on the 50-year-old face of the man wordlessly stroking him.
More than 40 years ago, that man, Richard Chestor, was one of the first children diagnosed in Colorado with autism.
As an infant, he stiffened when held. He was so repulsed by human contact that even being fed drove him to fits, said his mother, Geri.
He never spoke more than a few dozen words, each painstakingly taught by his mother.
It took years, thousands of dollars and dozens of doctors before someone put a name to what was wrong with Geri Chestor's little boy.
That diagnosis — autism — was seldom heard back then.
In decades that followed, the Chestors and their contemporaries racked up milestones of their own. Geri Chestor co-founded the state's first parent support group. She helped organize one of the first autism conferences here. She pestered lawmakers to make Colorado among the first states to educate disabled children.
The parents of that generation are "giants," said Betty Lehman, executive director of Autism Society of Colorado.
Four decades on, the fight isn't over. Chestor and her contemporaries again must break new ground in securing futures for now-middle-aged children likely to outlive their parents' devotion.
For Richard and his generation, the prognosis is mixed.
Recent decades have brought improvement in treatment. But options for adults lag behind.
"For adults, it's very tough," said Carol Meredith, executive director of The Arc of Arapahoe and Douglas County — and the mother of a 27-year-old son with autism.
A "time bomb"
Geri Chestor watches son Richard take part in caring for Slick.
The prospect of disabled adults outliving aging parents is a "demographic time bomb," said a state official who asked not to be named.
Those with significant needs can get services from the state "if they can get off the waiting list," Meredith said.
There are 1,717 disabled adults waiting for a place to live and 1,178 waiting for help with transportation and other services, said Liz McDonough, spokeswoman for the state human services department.
The state realizes the problem could worsen as the disabled population ages, McDonough said. But with constant budget cuts, "we have not figured out how we're going to meet those needs," she said.
The homeless or ill get priority, but "we even have a waiting list for emergencies," Mere dith said.
In 1970, Geri Chestor, then- president of the new Colorado Society for Autistic Children, told The Denver Post she knew of 20 children with autism in the metro area. Now, it's estimated that at least one in 110 children has autism.
While late in coming, Richard's diagnosis came too soon for him to go to school.
Every year, Geri Chestor tried to register her son in school, and every year, officials sent him away. Back then, the only programs were for kids with mental retardation, and Richard's IQ disqualified him.
Eventually, the Chestors and a handful of other families found a private teacher. And Chestor launched a game with the state.
When the family's property tax bill came each year, Chestor deducted $1,800 from the payment, then mailed it back with a note explaining she was subtracting the cost of educating her son, because the public schools weren't.
To this day, she's disappointed they never responded. "I was really hoping they'd take me to court. I wanted to challenge the compulsory-education law, and why it didn't include my son."
The Individuals With Disabilities Education Act, which guaranteed public education for children with disabilities, didn't come along until 1975. By then, Richard Chestor was 14.
By the 1970s, the prevalence of autism had grown enough that then-Gov. John Love appointed a task force to look into it. Geri Chestor was the group's only nonprofessional care provider, and the only woman.
The first thing the task force decided was to exclude Chestor from its meetings. "They said it would be too difficult for me," she said.
As if she hadn't already heard unpleasant things.
Her two older girls had no problems, one doctor pointed out when Chestor first embarked on her quest for a diagnosis. "So he told me, 'Maybe you just don't like boy babies.' " she said.
"That was pretty prominent then," said Phil Strain, an autism expert at University of Colorado Denver. "There was a lot of parent-blaming, and that was really promoted by one of the original developers in the field, Bruno Bettelheim."
In 1967, Bettelheim described autism as the result of cold, indifferent mothering. His "refrigerator mother" theory long dominated treatment, which often focused on fixing the parents.
"They psychoanalyzed me and played with (Richard)," Chestor said.
The therapy was often harsh. And that's one reason Richard lived at home into adulthood.
"When he was in his 30s, I got cancer, so I thought I'd better put something together (for Richard's future)," she said.
That something grew into Chestor House, a network of private residences across Jefferson and Boulder counties that house 40 disabled adults.
The homes are staffed by "host" families who act as sort of foster parents for disabled adult residents.
Fears of proposed cuts
Medicaid helps pay for Richard to live in one of those homes, but his mother worries that proposed cuts could force him out.
Still, his parents know they can't leave him money.
If disabled people on Social Security and Medicaid inherit more than $2,000, they have 90 days to get rid of it, put it in a trust or lose their benefits, said Greenwood Village attorney Steve Owens.
Kicking the disabled off Medicaid "is not a myth," Owens said. "They really do that."
Estate planning for the disabled was virtually unheard of 20 years ago, Owens said. Now, parents of special-needs children make up half his clientele.
At the Medicine Horse Program, in Boulder County, where Richard and Slick meet every other Friday, most therapy is focused on kids. But there is a demand for disabled adults to benefit from the calming influence and routine that working with horses provides.
"Horses don't speak English, so I think there's a lot of nonverbal communication," said Richard's therapist, Calyn Acebes.
After Richard groomed Slick, he climbed onto the horse's back. Holding the reins, Acebes persuaded Richard to let go and stretch his arms wide. He's learning balance, but also trust, she said.
Acebes pronounced his work "awesome" and coaxed Richard — who still recoils from being touched — into a halfhearted high five.
Richard long ago lost the words his mother taught him when he was little — before doctors told her to stop.
He can't say so, but his mother believes he is content.
"I think he likes his life. If he didn't, a lot of people would know about it," she joked.
The Senate may vote on the Budget Resolution tonight.
Please call!
Dial the Capitol Switchboard 1-888-245-0215 [toll-free] or 202-224-3121 and ask for the office of your Senators.
Message to Senators:
Please vote NO on the House-passed Budget Resolution.
People with disabilities disproportionately rely on government services to live, learn and work in their communities. These services assist many people with disabilities to live independently in the community avoiding costly institutional care and increasing the opportunities to work and pay taxes.
This budget proposal would set rigid limits on Medicaid and food stamps/SNAP, resulting in a 35 percent cut for Medicaid by 2022 and an almost 20 percent cut in food stamps.
Starting in the second decade, the House budget would turn Medicare into a voucher program, doubling the burden of payment for its beneficiaries.
Over 10 years, it would slash $4.3 trillion in needed services, about two-thirds of which help low-income people.
What is at stake?
Medicaid -
The proposed plan shifts the cost of Medicaid to low-income consumers, including people with disabilities, and cuts the program by a third over the next 10 years. The proposed plan converts Medicaid to a block grant which will cap funding regardless of health care cost inflation over time.
The proposed plan eliminates the current Medicare structure and transforms the program into a voucher system. It shifts the cost of services to the beneficiaries, almost doubling amount that individuals pay out of pocket for their ongoing health care.
The proposed plan repeals and defunds the Affordable Care Act (ACA) including programs that are vital for people with disabilities. For example, the CLASS Program and and the Community First Choice Option are two ACA provisions targeted at expanding home and community based options for people with disabilities.
Mike Ervin, an organizer for the national disability-advocacy group ADAPT and founder of its Chicago branch, is one of about 300 protesters from 25 different states who traveled to Capitol Hill to tell congressional leaders how Ryan’s proposal would impact the disability community.
“The idea of block granting really scares us, because a lot of people with disabilities rely on Medicaid in order to stay out of institutions,” Ervin said. “Block granting … gets rid of the idea that people are entitled to a minimun amount, no matter what their situation is. Now there will be less money available.”
For decades now, members from ADAPT and its state affiliates have made the trip one week every spring to Capitol Hill to lobby for or against legislation and to demand equality for people with disabilities (the group was instrumental in pushing for the passage of the Americans with Disabilities Act).
Of the 300 people circling the rotunda in the Cannon Building, Ervin said about 200 of them are in wheelchairs. One aspect of the proposal to block-grant Medicaid that worries ADAPT, he said, is that there might not be enough money for all recipients to purchase the medical equipment and medicine they need.
In addition to a “health care tax credit,” Rep. Ryan has proposed providing Medicaid beneficiaries with about $11,000 that can be applied to health care costs but has made an exception for states’ “long-term care and disabled populations,” which would not receive the tax credit. Instead, each state would receive a block grant of that portion of Medicaid funds.
“This change allows States maximum flexibility to tailor their Medicaid programs to the specific needs of their populations,” reads Ryan’s Roadmap Plan.
ADAPT does not agree and believes what will happen is that more Medicaid recipients with disabilities — most of whom lack steady jobs or another source of income — will be forced to move out of their communities and into institutions.
“We feel if they are really serious about the cost of Medicaid, they ought to do exactly the opposite of what Ryan is proposing,” said Ervin, who has muscular dystrophy and is mostly paralyzed from the neck down but is able to live at home with his wife because his home state of Illinois chooses to pay for his long-term care services through Medicaid.
Members intend to crowd the House building until they are spoken to by congressional leaders, Ryan or the president or until they are arrested. Their message to leaders will be to reject the idea of block-granting Medicaid and to require all states to make long-term care services (providing people with disabilities the opportunity to get care in their homes rather than in institutions) a mandated rather than optional Medicaid benefit.
UPDATE: At about 6:30 p.m. EST, Capitol police began arresting ADAPT members who refused to leave the rotunda. The organization released a brief statement as the arrests began:
Tonight, Capitol Police have begun arresting ADAPT members from all over the country, who have remained in the Cannon House Office Building since midday. The ADAPTers want Representatives Paul Ryan, John Boehner and Michelle Bachmann to publicly withdraw their support for Medicaid budget cuts and Medicaid state block grants. Without this commitment, ADAPT has decided to make a point that we are willing to do whatever it takes to defend the right of people with disabilities and seniors to live in our homes, not nursing homes and institutions. It is unacceptable for our own government to treat the 60 million Americans who rely on Medicaid like garbage.
Ervin told TAI that about 100 people have been arrested so far, many of them chanting “I’d rather be in jail than in a nursing home!” He said Ryan sent his chief of staff to speak wit the protesters but that Speaker of the House John Boehner refused to speak to the organization. Representatives who talked to the group and listened to their demands included: John Lewis (D-Ga.), Danny Davis (D-Ill.), Jan Schakowsky (D-Ill.), and Barney Frank (D-Mass.).
The Texas Legislature is faced with a budget challengethat pits the Republican majority’s desire to cut government spending against a vulnerable target: nursing homes.
Since the passage last month of House Bill 1, the general appropriations bill for the next two years, the prospect of displacing the frail and the elderly has become a politically charged issue.
Late Thursday, the Senate Finance Committee defied the House’s more conservative spending blueprint by restoring seven percent of funding to the Medicaid budget for nursing home reimbursements. That would keep their funding levels the same as the current biennium. It is hopeful news for the industry, which has been bracing for the worst. The full Senate and the House still must approve the committee’s decision, so the budget battle is far from over.
Before Senate budget writers took action in committee, HB 1 proposed reducing Medicaid reimbursement rates for all providers in Texas by 10 percent. Under that plan, nursing homes would be hit even harder. The industry has crunched the numbers and state officials confirmed they could be short the amount they would need to fully cover provider rates by a total of 33 percent, or $1.2 billion. That discrepancy is caused by three major factors: less general revenue, anticipated case load growth and fewer matching dollars from the federal government.
Nursing home advocates say the shortfall could lead to the closure of nearly half the state’s 1,100 nursing facilities and the layoffs of nearly 60,000 workers, resulting in the removal of nearly 46,000 residents.
Leslie Stratton, executive director of Cedar View Rehabilitation and Healthcare Center in Austin, started making regular visits to the Texas capitol this session to lobby against the cuts. She said that more than half of the 93 residents in her facility rely on Medicaid.
“I don’t think they truly understand what we do on a day-to-day basis,” Stratton said of lawmakers. Most families “are not equipped to deal with the level of care that these elderly need,” she said.
The care provided in-house ranges from feeding, changing and bathing residents multiple times per day to physical therapy and medical procedures like IV drips, dialysis, and the use of negative pressure therapy to treat open wounds such as bed sores.
William Ehrle, 53, of Austin, has lived at Cedar View since late 2009.
“The food is going to be lacking; the staff is going to be overworked,” said Ehrle, a former lobbyist at the Capitol who received a cancer diagnosis 11 years ago. He suffered a stroke during chemotherapy that paralyzed the left side of his body, and Medicaid became his lifeline. The lingering effects have included slurred speech and a tendency to fall. He said his only goal was to walk soon so that he could return home to his girlfriend.
“These people are just here, and none of them want to be here,” he said of Cedar View residents. “They’d love to be back with their families, but they just can’t. Their families either won’t or can’t take care of them.”
Derek Prince, the president and chief operating officer of Cedar View’s parent company, Mason Health, also serves as vice chair of the Texas Health Care Association. He said nursing homes statewide have already cut spending by millions, but he believes further cuts will compromise patient care.
Prince characterized the current crisis as “an Armageddon” situation for his industry, especially since the government created a system that strips residents of their assets in order to qualify for Medicaid services.
Diana Creamer of Austin, another resident at Cedar View, was involved in a motorcycle accident in 2007. Paralyzed from the mid-torso down, Creamer said her streak of bad luck continued when her husband left her and she lost her home. At the age of 52, skin sores and muscle spasms have become part of her daily existence; she must use a wheelchair. An additional Medicaid cut, she said, would be a “different level of hell.”
“It’s abject cruelty to have these cuts being made to people that desperately need this,” Creamer said, as her voice started to crack. “It’s even scarier for the residents that are here who are clueless as to where they are, who can’t feed themselves.”
State Rep. John Zerwas, R-Simonton, the chair of a budget sub-committee on health and human services, said HB 1 should be viewed as a proposal, not as a finished document. “We’re looking to the Senate to come forward with some numbers that would allow us to work with them and get us in a place that’s comfortable for everybody,” he said.
In the Senate Thursday evening, the budget-writing committee voted to preserve current financing levels for nursing facilities. It remains unclear where that money will come from and whether the House will approve.
“We are not going to throw the elderly in the streets,” state Sen. Jane Nelson, chair of the Senate Health & Human Services Committee and member of the finance committee, said earlier this week before the committee's latest action.
Until lawmakers reach a final compromise, Texas’ Medicaid administrators have limited options: They could cut provider rates at the front end, or come to the Legislature in 2013 to request money to cover the previous biennium’s expenses.
Gov. Andrew M. Cuomo’s administration is planning to announce initial steps aimed at addressing problems of abuse in homes for the developmentally disabled that are overseen by the state.
The moves, however, are unlikely to mollify advocates and aggrieved parents, long frustrated by widespread problems of abuse and mismanagement within the thousands of homes.
Under the changes, which are scheduled to be formally announced on Wednesday, new direct-care workers employed by the state will be required to have high school diplomas and undergo psychological and drug testing, according to a copy of a press release outlining the changes that was obtained by The New York Times. The administration is not changing existing policies that do not automatically disqualify all convicted felons.
The agency overseeing the homes, the Office for People with Developmental Disabilities, also plans to create a central unit to follow up and analyze all reports of abuse and neglect, in both homes operated by the state and homes operated by nonprofit service providers. A review panel will seek to ensure that discipline is administered consistently when employees are punished.
New training will be provided to direct-care workers and clinicians employed by the state, as well as supervisors, and state officials will also send out a memorandum to nonprofit groups to urge them to take similar steps.
Courtney Burke, the acting commissioner of the agency, called the moves “critical first steps.”
“We must thoroughly examine and reform the system to fulfill our duty and privilege to serve and protect the vulnerable individuals in our system from abuse and neglect,” Ms. Burke said in a statement.
This month, an article in The Times detailed widespread problems in state-run homes after a yearlong investigation. In hundreds of cases reviewed by The Times, employees who sexually abused, beat or taunted residents were rarely fired, even after repeated offenses, and in many cases were simply transferred to other group homes run by the state. Residents in the homes have conditions like Down syndrome, autism and cerebral palsy.
Michael Carey, a prominent Albany advocate for the developmentally disabled, said of the Cuomo administration’s new measures: “It’s not remotely enough.”
“There’s a lot more that needs to be done swiftly — a lot more than they’re saying needs to be done,” he said. Mr. Carey’s 13-year-old son, Jonathan, died in state care in 2007, in a death that was ruled a homicide at the hands of a state worker.
Mr. Carey expressed concern that internal committees within the troubled agency were being set up to review problems when a far broader overhaul of the agency’s management was still needed. He also said steps needed to be taken to ensure that cases of abuse were investigated outside of the agency.
“If anybody is involved in an apparent crime, it needs to be reported to law enforcement,” he said, contrasting that need with the policy of having the agency investigating itself or turning to “another state agency that’s going to sweep it under the rug.”
A vast majority of the roughly 13,000 allegations of abuse that come in annually are handled internally, despite a state law requiring that incidents in which a crime may have been committed be reported to law enforcement. Records turned over by the state show that fewer than 5 percent of allegations of abuse were referred to law enforcement, though the Cuomo administration is currently reviewing the agency’s recordkeeping practices under previous administrations.
The administration is also setting up an e-mail address for the public to submit suggestions or complaints: people.first@opwdd.ny.gov.
Nearly 40 years after New York emptied its scandal-ridden warehouses for the developmentally disabled, the far-flung network of small group homes that replaced them operates with scant oversight and few consequences for employees who abuse the vulnerable population.
A New York Times investigation over the past year has found widespread problems in the more than 2,000 state-run homes. In hundreds of cases reviewed by The Times, employees who sexually abused, beat or taunted residents were rarely fired, even after repeated offenses, and in many cases, were simply transferred to other group homes run by the state.
And, despite a state law requiring that incidents in which a crime may have been committed be reported to law enforcement, such referrals are rare: State records show that of some 13,000 allegations of abuse in 2009 within state-operated and licensed homes, fewer than 5 percent were referred to law enforcement. The hundreds of files examined by The Times contained shocking examples of abuse of residents with conditions like Down syndrome, autism and cerebral palsy.
At a home upstate in Hudson Falls, two days before Christmas in 2006, an employee discovered her supervisor, Ricky W. Sousie, in the bedroom of a severely disabled, 54-year-old woman. Mr. Sousie, a stocky man with wispy hair, was standing between the woman’s legs. His pants were around his ankles, his hand was on her knee and her diaper was pulled down.
The police were called, and semen was found on the victim. But the state did not seek to discipline Mr. Sousie. Instead, it transferred him to work at another home.
Roger Macomber, an employee at a group home in western New York, grabbed a woman in his care, threw her against a fence, and then flung her into a wall, according to a 2007 disciplinary report. He was then assigned to work at another group home.
Mr. Macomber, in fact, was transferred to different homes four times in the past decade for disciplinary reasons. It was not until last year, after he left a person unattended while he went into a store, that he was put on employment probation and eventually dismissed.
Over the past year, the state agency overseeing the homes, the Office for People With Developmental Disabilities, has repeatedly declined to make its top officials available for interviews. A spokesman, Herm Hill, said that the vast majority of the agency’s employees were conscientious, and that its hands were often tied because of the disciplinary and arbitration rules involving the workers’ union. Mr. Hill emphasized that the agency takes allegations of abuse “very seriously.”
But this month, after learning of The Times’s findings, Gov. Andrew M. Cuomo forced the resignations of Max E. Chmura, who led the agency, and Jane G. Lynch, the chief operating officer of the state’s Commission on Quality of Care and Advocacy for Persons With Disabilities, which is charged with protecting people with developmental disabilities.
“It is a basic function of state government to protect the most vulnerable among us,” Mr. Cuomo said in a statement.
The Cuomo administration said it would undertake immediate and comprehensive review of the agencies and their practices. Asked about the low rate of referral of allegations of abuse to law enforcement — for example, only a quarter of sexual abuse cases were reported — officials said they were reviewing flaws in their record-keeping.
But they have acknowledged that it had been the practice of the agency to handle most accusations of abuse internally, despite the office’s lack of forensic capacity. It does not use a crime lab or standard evidence-gathering techniques, and its investigators generally lack law enforcement training; sometimes, they are simply the supervisors of the accused employees.
The Times reviewed 399 disciplinary cases involving 233 state workers who were accused of one of seven serious offenses, including physical abuse and neglect, since 2008. In each of the cases examined, the agency had substantiated the charges, and the worker had been previously disciplined at least once.
In 25 percent of the cases involving physical, sexual or psychological abuse, the state employees were transferred to other homes.
The state initiated termination proceedings in 129 of the cases reviewed but succeeded in just 30 of them, in large part because the workers’ union, the Civil Service Employees Association, aggressively resisted firings in almost every case. A few employees resigned, even though the state sought only suspensions.
In the remainder of the cases, employees accused of abuse — whether beating the disabled, using racial slurs or neglecting their care — either were suspended, were fined or had their vacation time reduced.
Most of the state-operated homes are in economically depressed areas upstate, and the jobs they provide — paying from $29,000 to nearly $62,000 with generous benefits — are sometimes among the few decent employment opportunities. The state has no educational requirements for the positions, which involve duties like administering drugs, driving residents to day activities, feeding them and preventing them from choking. Some of those hired have shown no previous interest or skill in caring for difficult populations.
“There are some people that don’t belong there; I know some myself,” said Robert Matuszewski of Buffalo, who was suspended and ordered to undergo psychiatric counseling for neglecting a resident and for referring to his female colleagues as “bitches.” “They make me look like a schoolboy.”
In some cases, not even criminal convictions are disqualifying. Henry Marrero, an employee at a group home in Utica, was convicted of beating a 99-year-old man while moonlighting at a nursing home — slapping the man three times in the face and once on the stomach. He pleaded guilty to a misdemeanor and was barred from participating in federally financed health care programs. But he kept his state job working with the developmentally disabled.
Former regulators, employees within the system and advocates have grown increasingly dismayed at what they say is the state’s tolerance of abuse of the residents, whom the state refers to as “consumers” in its records.
“It’s absolutely staggering and shocking,” said Michael Carey, an outspoken voice for the developmentally disabled in New York. “There is massive systemic abuse and a failure to hold these individuals properly accountable.”
Mr. Carey’s autistic son, Jonathan, died in state care in 2007, in what was ruled a homicide at the hands of a state employee. His death led to the passage of Jonathan’s Law, which required the state to begin disclosing incidents of abuse to parents.
What is especially troubling to advocates is not just that the group-home employees are often moved around, rather than fired, even after egregious incidents of abuse. It is also that, after they arrive at their new workplaces, they often abuse again.
While working at a group home in western New York, Dwayne K. Smith told a developmentally disabled woman in his care to dance “in a provocative manner,” instructing her, according to state records, to “shake your booty and/or your boobs.” Reports also said he told a man and woman in his care to kiss and embrace, which they did. Mr. Smith was then transferred to a nearby home, and not long after, he sexually harassed a co-worker, taunted two people in his care by repeatedly questioning their sexuality and served beer to another, state records showed.
Protection by the Union
The Civil Service Employees Association, one of the most powerful unions in Albany, makes no apologies for its vigorous defense of the group-home workers it represents.
But the union’s approach — contesting just about every charge leveled at a worker — has contributed to a system in which firings of even the most abusive employees are rare. Most disciplinary measures represent a compromise between management and the union, often reached at the urging of an arbitrator chosen by both sides.
Ross D. Hanna, the director of contract administration for the association, likened the union’s role to that of public defenders, saying it was required by state law to represent its members.
“If they’re brought up on charges, we have an absolute duty to represent them,” Mr. Hanna said. “That’s our job.”
He added: “When we know the person is guilty, we try to convince the person to get out of it by resigning. But if the person decides to go forward, we have to do our best job.”
This disciplinary system has made it possible for employees like Mitchell T. Lovett, who worked in several different homes on Long Island, to rack up 10 offenses — including twice punching residents in the face — before losing his job, according to personnel records.
In 1988, three years after he was hired, Mr. Lovett was cited for neglect after a person in his care walked out of a group home at night; he had not conducted all of the required bed checks. Both were serious offenses for a population for which wandering off is a frequent problem.
The state sought an eight-week suspension, but after the union objected, Mr. Lovett was given a letter of reprimand.
Five years later, he received another letter of reprimand for 17 unauthorized absences. The next year, he was disciplined for a dozen unauthorized absences. In 1995, he was disciplined three times: he was late on 11 occasions, left his shift without authorization and failed to conduct any of the required checks of residents’ beds during a night shift.
In 1999, the state sought another eight-week suspension after Mr. Lovett spent up to three and a half hours a shift making personal phone calls. In an interview, Mr. Lovett explained that he had been going through a divorce. He was docked a week’s worth of accrued time and reimbursed the agency for his phone calls.
The state first tried to fire Mr. Lovett in 2000, when he was accused of physical abuse. Mr. Lovett said he caught a resident in the eye with his elbow while trying to subdue him.
The state characterized the matter differently. “You punched him in his left eye,” a disciplinary report said.
The union contested the charge; Mr. Lovett was sent to another home, one of three transfers for disciplinary reasons during his career.
A few years later, the state tried to fire him again when his driver’s license was suspended — making it impossible for him to drive the residents to their daytime programs. But the firing was overturned during arbitration, and he received yet another letter of reprimand.
By 2009, Mr. Lovett was assigned to a group home in Lynbrook. During one of his shifts, he and another employee were preparing to bring residents home from an outing. One resident, a 60-year-old man with “severe developmental disabilities,” refused to leave, “throwing his arms and legs around,” according to two employees from another home who were witnesses. In the process, he knocked off Mr. Lovett’s glasses.
Mr. Lovett punched the man in the left eye. Two witnesses were said to be “shocked” and reported the episode to their supervisors.
In the interview, Mr. Lovett said he had thrown no punches. He said he had been rubbing the man’s back to calm him, and his actions were misinterpreted in the commotion.
An arbitrator did not believe him, and Mr. Lovett’s firing was upheld.
The union declined to discuss Mr. Lovett’s case, saying it was against their policy to talk publicly about personnel matters. In a statement last week, the agency said that it “often faces significant obstacles” in “securing removal of some employees who may have committed abuses,” and said that it would review its procedures. Mr. Lovett, 49, said he had been unfairly disciplined in some cases, and blamed stress and deficient training in others. He said that as a father of five, he almost always worked another job, including selling real estate or insurance.
“It’s a lack of training,” he said, “and they allow you to do certain things a certain way for a long time, then the rules change, and people get caught up in doing things that everybody’s doing. So when in Rome, you do as the Romans, you know?”
“The job is really stressful,” he added. “You have residents that you work with that are attacking you, they have hepatitis, they have things that can be transferred. They bite you, they hit you, they verbally abuse you. It’s almost like working in a prison.”
Few Consequences
One obstacle complicates any effort to take action against employees accused of abusing those in their care: The victims often cannot talk or have extreme cognitive impairment. Local law enforcement officials point to this to explain a lack of prosecution of cases.
But another factor seems to be at work. In many cases, the developmentally disabled do not have families actively involved in their lives, and, hence, no advocates to assure that state officials and the police take the mistreatment seriously.
The case involving Mr. Sousie is especially illustrative.
Five years ago, Mr. Sousie, then 47, was working at the home in Hudson Falls, about 50 miles north of Albany. After a co-worker saw him alone and standing between the legs of the severely disabled woman, who was lying on her back, the police were alerted. The victim was taken to the hospital, where a rape kit was administered, and Mr. Sousie was placed on administrative leave.
The victim was “unable to communicate,” the police report said, and had no relatives in regular contact.
The inquiry by the Hudson Falls police foundered. It took the department nearly 10 months to get a DNA report on the seminal fluid from the state police laboratory. But during that time, officers never obtained a specimen of Mr. Sousie’s DNA for comparison.
The case then sat dormant for nearly a year and a half, during which time Mr. Sousie was allowed to return to work at a different home. The Washington County district attorney, Kevin C. Kortright, and the Hudson Falls police chief, Randy Diamond, said DNA technology was not sufficiently advanced in 2007 to make progress in the case, even though it was in widespread use at the time.
Finally, in 2009, an enterprising police detective took up the case, and a court order was obtained to get a DNA sample from Mr. Sousie. A case was brought against him in county court, including a felony sodomy charge, only to be dismissed after a judge ruled that the district attorney’s office withheld evidence from the defense.
Mr. Sousie was convicted of endangering an incompetent person, a misdemeanor in Hudson Falls, and spent less than a year in jail. Law enforcement officials had trouble explaining the delays and errors in the case and blamed the victim’s inability to communicate.
“Certainly, if you had somebody who could communicate better, it would be an easier investigation,” Chief Diamond said. “That’s the biggest hurdle in this case.”
Mr. Kortright likened it to “the rape of a 3-year-old,” adding, “It’s a hard road without a confession by the defendant.”
While the prosecution was plagued with problems, the state’s response was even more puzzling.
After any episode that warrants discipline, the state is supposed to serve the employee involved a notice of discipline, a formal listing of accusations, but none was issued in this case, despite the presence of a witness and of physical evidence. The office did not conduct more than a perfunctory inquiry. Mr. Hill, the agency spokesman, declined to discuss the matter.
Mr. Sousie, in an interview, denied that he had been involved in a sexual assault.
“I was tucking in my shirt, and I got accused of raping a client, that’s what happened,“ he said. When it was pointed out that his lawyer had, as a defense, argued that Mr. Sousie had been masturbating — hence the presence of physical evidence — he conceded, “That’s the defense that we used, yes,” but declined to elaborate.
The state had reacted more aggressively when Mr. Sousie, back in 1992, assaulted a co-worker. In that case, state records said, Mr. Sousie punched the other employee in the face. “Then you threw him onto the floor, and while straddling him, you yelled profanities at him.”
Explaining what had happened, Mr. Sousie said, “My wife and a co-worker were getting to know each other at work, and that didn’t sit too well.”
The state moved to fire Mr. Sousie, but instead reached a settlement with the union. He was placed on probation for two years, had 80 hours of back pay withheld, lost six days of leave time and was ordered to undergo counseling. But he remained on the job.
If the Hudson Falls detective had not revived the sexual assault case and sent him to jail, of course, Mr. Sousie would, presumably, still be employed.
In the interview, Mr. Sousie, who was released from the county lockup last year, said he was now looking for work and looking forward to collecting his state pension.
“Today’s another day, you know,” he said. “I’m waiting till I get old enough to draw my retirement.”
Waning Oversight
In 1972, the Willowbrook scandal brought nationwide attention to the conditions of the developmentally disabled in state care. While Willowbrook had long been troubled — Senator Robert F. Kennedy called it a “snake pit” in 1965 — it was footage by Geraldo Rivera, then a young television reporter, that resonated.
The images of disabled children were searing. “Untended, some smeared with their own feces, many of the children were unclothed and all were simply left to sit in the ward all day,” The Times wrote at the time. “The only sound picked up by the technicians was something of an eerie communal wail.”
Prodded by the federal courts, Gov. Hugh L. Carey began a huge overhaul of the state’s system of care, and turned to Clarence Sundram, a young lawyer, to help lead the way. Mr. Sundram, a 28-year-old immigrant from India, helped conceive of the Commission on Quality of Care, which would provide the first independent oversight of how people with developmental disabilities were treated.
“We really had no capacity to investigate,” Mr. Sundram said in an interview. Existing investigative agencies, he added, “didn’t particularly understand the mental health system, so they tended to write these very sensationalist reports that weren’t particularly helpful in terms of, how do you fix this problem.”
Mr. Sundram ran the commission for two decades, bringing an outspokenness and assertiveness to the new agency.
He was sometimes confrontational and made frequent use of the bully pulpit, demanding that the news media pay attention to this population. Mr. Sundram took on broad problems, like the use of physical restraint and seclusion, and the need to report serious episodes to law enforcement.
His approach did not always sit well with commissioners at the state’s Office of Mental Health and the Office for People With Developmental Disabilities, who felt Mr. Sundram was always inviting more scrutiny of their problems.
But there is no doubt that after Mr. Sundram left in 1998, the attention he brought to the issue all but disappeared and the agency’s public profile collapsed.
These days, the commission is more likely to play down allegations of abuse than to root them out. And its resources are limited: in 2009, it investigated less than two percent of allegations of abuse or neglect of the disabled by employees.
The commission also appears to operate under a media blackout: Jane G. Lynch never spoke to a reporter during her nearly three-year tenure, her staff members said, and declined to comment for this article.
When you stop speaking out publicly, Mr. Sundram said, “nobody has any idea what the hell you are doing.” Given the competing demands for attention, he said, the public will simply move on.
Governor Cuomo has asked Mr. Sundram to return to Albany to help overhaul the agency.
A Variety of Offenses
The hundreds of files examined by The Times provided a disturbing inventory of offenses committed by employees — few of which ever got them fired.
Kenyetta Williams, an employee at a group home on Long Island, left a resident “soiled with feces and urine and suffering from a broken leg” on her bedroom floor for more than an hour, the records stated. Ms. Williams was suspended. In a brief interview last week, she said she was taking care of too many residents and covering for an absent co-worker at the time.
It was her 13th disciplinary write-up since 1994. Another employee, in the Finger Lakes region, was fined $375 after allowing a person in her care to sit in a van in her own feces for five and a half hours.
In 2009, the state recommended firing Charles Weimer, an employee in western New York who told a resident, “Why don’t you get a Brillo pad and scrape the black off you?” Mr. Weimer, who had previously been written up for abuse, sleeping on duty, medication errors and neglect, was reassigned, and was only later fired for violating his probation.
Michelle Penharlow, another employee in western New York, “picked up a knife” and pointed the blade and shook it at a resident, according to a 2008 discipline report, and kicked a resident “in or about the buttocks.” The state called for her firing, but she was suspended and transferred to another home instead. The next year, after being written up for 10 different incidents of verbal abuse, neglect and mistreatment, she was fired.
Because the more than 2,000 state-run group homes are scattered in communities statewide, little supervision is provided on-site, and it is often up to staff members to turn in their colleagues when one misbehaves. Typically, four to eight developmentally disabled residents live together in what are known as Individual Residential Alternatives; they are sometimes cared for by as few as two employees.
There is no question the jobs are stressful: Some residents can be violent themselves, and others see the world as a small child does.
Some of the employees disciplined for abuse blame their co-workers for their troubles.
Roger Macomber, the employee in western New York, faced charges including flinging a disabled woman across a room into a wall and destroying notes describing unexplained bruises on a person in his care.
He said that he had been turned in by a trainee who did not understand that aggressive residents could not be handled with kid gloves. He said he argued with the trainee before she made her accusations: “I called her a liar, I called her paranoid, I called her stupid,” Mr. Macomber said. “Because of that, she brought up all these different incidents that she had seen.”
A Whistle-Blower Thwarted
Despite the agency’s tendency to return offending employees to work, there is one disciplinary matter it has taken seriously — punishing a whistle-blower named Jeffrey Monsour.
Mr. Monsour, a 50-year-old from upstate New York, went to work for the agency in 1999, after a career helping to run family restaurants ended with his father’s retirement. He was partly inspired by his family’s experience caring for his aunt, who had Down syndrome.
Mr. Monsour found his work as a developmental aide — the agency’s primary caretaker position — rewarding, though it was not without challenges. In 2004, he was asked to conduct a fire drill at a group home in Glens Falls when a young man with Down syndrome refused to evacuate.
“He sat on the floor and wouldn’t leave,” Mr. Monsour recalled. “So I wrote up that he could not evacuate.”
He was told by regional managers to conduct another drill. Again, the resident refused to leave, and became upset when Mr. Monsour tried to help. Supervisors arranged a third drill using another escape route, but the resident would only edge down the stairs on his bottom, blocking the exit for everyone else.
“After that point, the management there was ruthless to me,” Mr. Monsour said. “They were mad I brought the issue up and just didn’t sign the slip and say he could get out in two minutes and 30 seconds like everybody else, or three minutes. You know, he couldn’t get out — what do you want me to do?”
Mr. Monsour believes the episode cost him a promotion, but he was undeterred and did something unusual. He filed a Freedom of Information Law request, seeking records of fire drills, and later confronted Mr. Chmura — then a top deputy — with records suggesting that drills were being falsified.
In some cases, disabled clients were said to have evacuated from their beds at night in less than three minutes, a breakneck pace a veteran worker like Mr. Monsour found unlikely.
In 2009, when a fire at a home in the Adirondacks killed four residents, an investigation showed that the home’s fire drill reports were “substantially inaccurate,” and “contained serious irregularities which called into question the veracity of the drills.”
Mr. Monsour e-mailed Mr. Chmura, chiding him that “my concerns fell on deaf ears.” Mr. Chmura responded, assuring Mr. Monsour that the agency reviewed his claims.
Mr. Monsour kept sending out Freedom of Information Law requests, obtaining records showing, among other reports, long absences from work for top officials in the Albany area and stark inconsistencies in the discipline of workers. He was shocked to see some workers had returned to work after physical abuse.
He was also increasingly uncomfortable with what he saw as his union’s complicity and ran an unsuccessful campaign for president of his local in 2009.
The Civil Service Employees Association “is right there in bed with them,” he said, adding, “when you’re getting interrogated, they know there was just a case settled where somebody did something severe, and they got a mild penalty, and they’re not telling you this.”
As Mr. Monsour’s information-seeking continued, the agency began frequently bringing him in for questioning. In one evaluation, he was called “not a team player” because he called 911 after a resident wandered off, running through traffic. The agency later redacted the reference from his evaluation.
In another episode, supervisors at the agency filed a special disciplinary report used to document workplace violence, saying Mr. Monsour became overly upset when informed of a disciplinary action against him. The report was rejected as insufficient by another agency official.
In 2007, Mr. Monsour was interrogated at length after he allowed a resident, who was being visited by his mother, to share some of the eggplant parmesan served to him by the staff at the group home with her.
The interrogation was taped by agency officials and by Mr. Monsour, but agency officials later told him in writing that he could not release the tape to the media. They sent Mr. Monsour a second letter warning that he could not even release a transcript redacted to protect patient confidentiality.
Mr. Monsour believes a large part of the problem is that supervisors do not spend enough time in homes beyond weekday work hours, underscoring the challenge in managing such a sprawling network of residences.
“You can’t manage all these group homes from a telephone,” he said, adding, “there are a lot of good developmental aides who are put in bad situations by management.”
Mr. Monsour wrote to Gov. David A. Paterson’s office last year and the attorney general’s office, requesting an investigation of the Office for People With Developmental Disabilities. Along with his letter, Mr. Monsour included the disciplinary files he had obtained through Freedom of Information Law requests. The governor’s office never responded, and the attorney general’s office, then run by Mr. Cuomo, referred the matter back to Mr. Monsour’s superiors.
“I didn’t even get a call from an investigator,” he said, adding, “I was thrown under the bus.”
Mr. Monsour’s efforts appear to have had little effect on the culture inside the agency.
Employees across the capital region, the area where Mr. Monsour works, were recently warned to keep quiet about episodes inside the group homes. One handout distributed by management bluntly directed employees not to mention reports of abuse in daily progress notes kept on residents. Doing so, the handout warned, could make them subject to subpoena.
“DON’T report in your notes that an Incident Report was filled out,” the instructions said, adding: “IF IT ISN’T DOCUMENTED, IT WASN’T DONE.”
In February 2010, Jennifer Daugherty, a 30-year-old, mentally challenged woman from Greensburg, Pa., was brutally murdered by six people pretending to be her good friends. Holding her hostage for days, the perpetrators allegedly tortured Daugherty, shaving her head, binding her with Christmas decorations, beating her with a towel rack and vacuum cleaner, feeding her detergent, urine and various medications and then forcing her to write a suicide note, before stabbing her to death.
The sadistic attack on Daugherty was anything but unique.Still, few Americans are aware of the special vulnerability of people with emotional, intellectual and physical disabilities to extraordinary violence. Thinking of crimes inspired by hate or bias, most people conjure an image of a burning cross on the lawn of a black family, or swastikas scrawled on the walls of a synagogue. They may recall the name of James Byrd, the black American in Jasper, Texas, who was dragged for miles to his death behind a pickup truck by three white supremacists, or they might think of Matthew Shepard, the gay college student who was viciously beaten and then tied to a fence, left to die in the desert outside of Laramie, Wyo.
But the same Americans may have legal and emotional “tunnel vision,” not seeing a hate crime in the brutal murder of Jennifer Daugherty, even though she was apparently singled out only because of her intellectual deficit.
Thirty-two states have hate crime statutes to protect people who have disabilities, but18 states still do not. At the end of October 2009, President Obama signed the Matthew Shepard and James Byrd, Jr. Hate Crimes Prevention Act, bringing a uniform approach to the protection of hate crime victims that was not possible when matters were left to the states. The Shepard/Byrd legislation expanded federal hate crimes law to include offenses motivated by a victim’s disability, gender, sexual orientation and gender identity. In addition, the new law eliminated a requirement that hate crime victims be engaged in a federally protected activity — for example, the right to live in the residence of your choice — to qualify for protection.
Still, attacks on people with disabilities are often overlooked because many people are not aware of the extreme vulnerability to maltreatment that accompanies such disorders as cerebral palsy, autism, multiple sclerosis, learning disabilities and mental illness — even though, according to anonymous victim accounts from the Bureau of Justice Statistics, the 54 million Americans with disabilities experience serious violence at a rate nearly twice that of the general population. Their risk of being a victim of sexual assault is at least four times higher than that of people without disabilities. In 2008 alone, Americans with disabilities were victims of about 47,000 rapes, 79,000 robberies, 114,000 aggravated assaults and 476,000 simple assaults. Adding to the trauma of victimization, people with disabilities are much less likely than able-bodied victims to seek medical treatment for their injuries, often choosing, instead, to suffer in silence.
Over the years, police departments around the country have increased their sensitivity to hate crimes based on race, religion or sexual orientation, but they still may not recognize bias against disabilities as a motivation for an assault. For the year 2009, just 97 or about 1 percent of the 7,789 hate crimes recognized by the police in FBI data reportedly targeted people with disabilities. (Of that total, 72 reports were designated as anti-mental disability crimes, and 25 were anti-physical disability crimes). This appears to represent a tremendous underestimate. When it surveyed nationally representative individuals anonymously about their experiences with crimes — even offenses not reported to the police — the Department of Justice determined that more than 11 percent of all hate crimes targeted people with disabilities. In other words, by asking victims rather than the police, the Justice Department found the number of disablist attacks numbered in the thousands.
And that’s not to mention another problem: Hate offenses are underreported, generally. The FBI hate crime count is based on a voluntary reporting system that many local police jurisdictions refuse to support. In 2009, for example, only nine hate crimes were reported for the entire state of Alabama, which would reflect just one such crime per 523,190 citizens, according to Census Bureau population estimates. By contrast, other states have typically reported a much higher rate of hate crimes — for example, Massachusetts reported 322 in 2009, a rate of one for every 20,476 citizens, and New Jersey had 549 reported hate crimes, reflecting a 1-in-16,000 rate. It is hard to imagine such a huge divergence in rates arising out of anything but different reporting standards — and, perhaps, different levels of enthusiasm for reporting hate crimes at all.
Hate crimes are also underreported because motivation is a central element, and motives are often difficult to prove. The perpetrators might not have used a slur or written hate graffiti on a wall or sidewalk; they might never have confided their intent to the police or an acquaintance.
In July 2006, for example, Steven Hoskin, a 39-year-old man with severe learning difficulties who lived in a small English village, was violently tortured for hours in July 2006 by five people — three young adults and two teenagers — before he was forced to take dozens of painkillers and then pushed from a viaduct to his death. Pretending to be Hoskin’s friends for several months before the fatal incident occurred, the five young perpetrators bullied their victim into submission on a number of occasions. The victim became convinced that he was being included as a member of a “gang” and was willing to endure pain and suffering to remain in good standing with his “good friends.” The torture and murder of Steven Hoskin had no economic motive. The crime would have been impossible if Hoskin had had normal intellect. But proving that the attack was motivated by the victim’s disability is not easy to do.
For many reasons, victims are themselves underreporters of hate offenses. Based on a history of animosity, black and Latino victims may see law enforcement as an “army of occupation”; immigrants may identify the police with a tyrannical regime in their home country or be concerned about being deported; gays and lesbians may perceive, rightly or not, that police officers are generally homophobic.
But violence against people with disabilities differs in important ways from other hate crimes, making attacks even less likely to be reported or acknowledged. Unlike racially and religiously motivated offenses, attacks against people with disabilities tend to be committed not by strangers but, more often, by family members, neighbors, employees and friends who may also be caregivers.
In January 1999, eight men and women tortured a 23-year-old man with learning disabilities who worked as a cook at a fast-food restaurant in Tinton Falls, N.J. Apparently imitating the horror movie Scream, which they had recently viewed, the group persuaded the victim to attend a “party” and, when he arrived, tormented him for almost three hours. They stripped their victim to his underwear, slapped and kicked him and taped him to a chair that they dragged around the room. One perpetrator attempted to shave the victim’s eyebrows and head with a razor; another completed the job with electric hair clippers. Members of the group then whipped him with rope knotted with a series of plastic beads, so his naked back, face and chest were covered by a network of cuts and bruises.
Cutting their victim out of the chair, they forced him to wear a bra and a woman’s suit and dragged him into a van, driving him into the woods. Upon reaching a desolate area, they repeatedly punched him and slammed him to the ground. Finally, the victim was able to escape. He staggered to a nearby property, where he convinced a security guard to summon the police, who drove him to a local hospital where he was treated and released.
The victim wanted desperately to be accepted by his tormentors. Two weeks earlier, he had attended a party with the same perpetrators, who abused him and held him hostage for the evening. But he didn’t file charges at the time and instead was willing to attend a second party with the same group a couple of weeks later. Even after charges of kidnapping and aggravated charges were brought against his tormentors, the victim didn’t seem to appreciate the brutality of the attack, telling reporters that he “just wanted to make friends with these people.”
Victims with disabilities are often extremely reluctant to report attacks out of fear that their tormentors will retaliate. They may have psychiatric or intellectual deficits that seriously interfere with their capacity to recognize false friendships or to report crime. Or they may assume a position of dependence in a relationship with caretakers who conceal their sadistic urges in the high credibility of their institutional roles. In October 2008, for example, five staff members in a Louisiana psychiatric facility were arrested for allegedly battering their patients with hand weights and inserting bleach into their open wounds. The victimized patients had complained bitterly but were perceived to be out of touch with reality and undeserving of being taken seriously.
Ignoring such hate offenses is particularly unfortunate because the level of sadism and brutality is frequently greater than in their racial and religious counterparts, and their perpetrators often engage in the sort of overkill not usually found in attacks based on other kinds of bias.
Slurs used by offenders represent the most widely employed evidence for establishing the commission of a hate attack. Racial and religious epithets are widely recognized, even by those individuals who themselves would never use them and are repulsed by those who do. The nasty labels placed on people with disabilities are just as hurtful as their racial and religious counterparts but are not recognized to the same extent. People with disabilities have been referred to as invalids (i.e., not valid persons), handicapped (capable only of begging, cap in hand) or disabled (incompetent). Other hurtful labels include crippled, deformed, feeble-minded, idiot, moron, imbecile, insane, lunatic and maniac. Often, people who wouldn’t dream of using the N-word feel free to refer to an intellectually challenged individual as a “retard.”
As a cultural phenomenon, racist preferences apparently find inspiration early in life, as children begin to develop the biases that they have learned from dinner table conversations, family members, friends and television programs. In an early study by social psychologists Kenneth and Mamie Clark, preschool children were asked to choose either a black or a white doll to play with. The majority of both white and black children preferred to play with the white doll, indicating the early impact of racial subordination and segregation on the psyche of countless minority youngsters. Testimony about the Clark and Clark study was given in the landmark 1954 Supreme Court decision in Brown v. Board of Education, which mandated the desegregation of America’s schools.
Negative perceptions of disability are also, it seems, formed very early in life. Most children aged 3 to 6 are already aware of physical disabilities and have already attributed negative characteristics to those who are not physically able-bodied. Writing in the journal Mental Retardation, researcher Laura Nabors notes that when able-bodied preschool children were shown pictures of persons with and without disabilities, the preschoolers showed a marked preference for able-bodied playmates and an aversion to their physically challenged counterparts. Children are more likely to learn about psychiatric and intellectual deficits later, when their cognitive abilities have developed enough to think of people who are developmentally different in unflattering terms.
Over time, what began as an aversion may easily be transformed into outright prejudice and hate. From the viewpoint of a perpetrator, the members of an out-group — defined by their physical or developmental differences — may represent a threat to his or her economic well-being, to cultural or religious values, to neighborhood composition, to educational opportunities and even to physical survival. What we might view as a hate crime is therefore often regarded by a perpetrator as self-defense. Hate attacks, therefore, usually occur after some precipitating event — a gay rights rally, the first Latino in a college dormitory, a developmentally delayed student mainstreamed into a regular classroom — that is seen as calling for a “last resort” response.
As with members of racial and religious groups, individuals with disabilities have often been the victims of such “defensive” hate crimes. A couple in suburban Chicago, both of whom were dependent on wheelchairs, planned to install a ramp at the entrance of their single-family residence — until neighbors threw rocks through their windows and sent threatening letters saying, “Your kind won’t last here.” The couple gave up and moved away. They might have stayed in their home had they received support and encouragement from neighbors and the police; they did not.
Many hate crimes are committed by groups of young people — teenagers or young adults — who, bored and idle, are looking for a little excitement at someone else’s expense. Such thrill hate attacks bring few practical gains to their perpetrators. Instead, they get an intangible benefit: bragging rights with friends who think that hate and violence are pretty cool. Thrill crimes are usually directed by a sadistic leader who has tremendous influence over a group of friends who may not be hate-filled but are all too eager to be accepted.
In May 2010, a 19-year-old high school student with a developmental disability was brutally attacked on a busy Boston street, in broad daylight, by a group of nine young people, ages 15 to 21. The bloodied victim, who later described himself to police as “slow and challenged,” screamed and pleaded for help, then curled up on the ground, as the perpetrators repeatedly kicked, beat and choked him. The victim later told police that “the kids up the street had jumped him.” He had known his assailants from the Dorchester Youth Collaborative — an agency for high-risk teenagers — and they did not like him. But the youthful perpetrators used their shared animosity as a bonding exercise. The more they shared in bashing their victim, the more cohesive their friendships became.
Some of the most dangerous hate crimes have a retaliatory motive, encouraging “tit for tat” in an exchange of violence. When the motive is retaliatory, an original attack by the members of one group is met by a retaliatory attack, often on a random basis, by the members of the victim’s group. In other words, the victim becomes the villain.
On Jan. 19, 2007, John Odgren stabbed to death his 15-year-old schoolmate — a random victim — in a restroom at Lincoln-Sudbury Regional High School in Massachusetts. The 16-year-old killer had been diagnosed, early on, with major depression, Asperger’s Syndrome, attention deficit hyperactivity disorder and obsessive-compulsive disorder. Because of his disabilities, Odgren had a long history of having been bullied and having sought to retaliate violently. In third grade, he threatened to shoot some girls who had harassed him. In fourth grade, he jabbed a pencil into another student’s chest. He was bullied repeatedly as he bounced from school to school and finally got even with his mainstreamed peers by killing an innocent victim. For taking the life of his schoolmate, Odgren was tried, convicted of first-degree murder and sentenced to life in prison without parole eligibility.
It is important to acknowledge that some organized hate groups overtly display their hostility to disabled people in a manner that encourages nonmembers to become violent. In early November 2002, for example, the white supremacist group Stormfront allocated a section of its Web discussion forum to eugenics. Among the comments presented online was the following: “We must put into place social and economic systems that encourage the best genes to dominate in numbers as well as power.”
But only a very small minority of hate crimes — perhaps 5 percent — directly involve organized hate groups. Disability hate crimes are no different in this respect.
Victims of disablist violence learn to respond in any of a number of ways to the maltreatment they are forced to endure in their day-to-day lives. In the face of widespread bias, some people with disabilities come to accept the nasty stereotypes being communicated widely about them and suffer a profound loss of self-esteem. They may see themselves as inferior, incompetent, totally disabled. Rather than regard their disability as only one of many characteristics they possess, they may instead come to define themselves totally by their most serious disadvantage and give up the struggle for self-improvement, sinking deeply into depression, drug abuse or alcoholism.
Other people with disabilities refuse to accept the nasty stereotypes that invade their lives, instead seeking to avoid the nastiest implications of their maltreatment by segregating themselves in terms of friendship, employment and dating. Rather than give up, they attempt to insulate themselves from the insulting behavior of the able-bodied.
Still others seek collectively to change the maltreatment they have suffered because of their disabilities. Since the 1970s, members of the disability rights movement have instituted boycotts, blocked traffic and engaged in a variety of protests, marches and sit-ins. Closely mirroring the civil rights and women’s movements of the 1960s, organized efforts have aided in the passage of disability-rights laws and the blockage of policies that would have been hurtful to people with disabilities. In the last couple of years, hundreds of people in wheelchairs have demonstrated on the streets of Atlanta, Chicago, Washington D.C., and Nashville. In August 2008, the Special Olympics and 21 other disability groups called for a nationwide boycott of the Ben Stiller-directed film Tropic Thunder because of what the organizations considered a “negative portrayal” of the developmentally disabled.
Such collective efforts are important as models for what the victims of hate violence might be able to achieve in the future. For now, however, such demonstrations are typically designed to reduce employment discrimination or to discourage cuts in government budgets. The hate crime response has not yet occurred.
We don’t have to change the law on hate crimes against people with disabilities — that has already happened — but we must change the thinking of ordinary people who consider only race, religion or sexual orientation as grounds for bigotry. Many people with disabilities are harmed more by the way others treat them than by their intellectual, psychiatric or physical disadvantages. This unfortunate fact has been widely ignored by otherwise decent Americans, who, when they think of hate crimes, tend to focus on people wearing sheets, armbands, steel-toe boots or Nazi tattoos. It is easy to forget that hate begins in the silence of ordinary people.
The number of suspected abuse cases in care homes and residents’ own properties rose by almost a third in 12 months, according to the Care Quality Commission.
The watchdog said care workers and home helpers were more alert to possible cases of abuse or neglect and were increasingly likely to refer their concerns to social services.
The findings suggested that the true scale of the problem may have been hidden,with many elderly and disabled victims suffering “in the shadows”.
The Care Quality Commission disclosed the figures in its last ever national evaluation of council-funded social care for adults. In future, the watchdog will not conduct annual reviews of the standards in publicly funded residential care or home help across England.
Under reforms introduced by the Coalition, councils are expected to be asked to assess each other’s performance in an attempt to maintain quality.
The watchdog found that services had improved in many areas between 2009 and 2010 and remained of good quality overall in 145 out of 152 councils.
However, three councils were rated “poor” for keeping elderly and disabled adults safe from abuse and neglect this year, one more than in 2009.
Between April 2009 and March this year, 103,000 cases of suspected abuse had been referred to social services for formal investigation, up from just under 80,000 in the previous year.
Town hall leaders warned that goodwill alone would not protect vulnerable adults from mistreatment, especially if government funding is cut.
Cllr David Rogers, chairman of the Local Government Association’s community wellbeing board, said too many elderly and disabled people were still suffering “violence, harassment, humiliation and degradation”.
“It’s shocking that in the 21st Century, thousands of vulnerable adults, be they pensioners or people with physical or learning disabilities, are still being mistreated, often in their own homes at the hands of people they know,” he said.
“While the profile of child abuse has risen over recent years, one in 30 of the older generation still suffer in silence, their tragic plight remaining unknown by even their closest neighbour. The statistics for disabled adults are even worse.”
The LGA called for new legal requirements to be placed on social, health and other services to promote the protection of vulnerable adults.
There has been “some great work” but there is “a real risk the current economic climate could see adult abuse slip back into the shadows”, he said.
A spokesman for the Care Quality Commission said: “There has been a significant overall improvement in the past year in how councils are raising awareness of the issue and developing procedures for dealing with alerts of abuse.
“We believe that the increase in the number of referrals is a positive reflection of a higher awareness among care and health professionals and the wider public.”
States NEED to start providing better home health care!! Nursing homes for someone who is physically disabled is wrong! Everyone deserves to be in ones own home!
There's been a quiet revolution in the way the elderly and young people with disabilities get long-term health care. A new legal right has emerged for people in the Medicaid program to get that care at home, not in a nursing home.
States, slowly, have started spending more on this "home and community based care." But there are barriers to change: Federal policies are contradictory and states face record budget deficits. As a result, for many in nursing homes — or trying to avoid entering one — this means the promise to live at home remains an empty promise.
Changes in policies and funding have made home and community-based care a more viable option.
You've probably never seen a person hooked up to so many plastic tubes as Olivia Welter. There's a ventilator tube that keeps her breathing. There's a feeding tube that's also the tube for her dozen or so medicines. There are the tubes to the vibrating vest that loosens the mucus in her lungs. Another tube to help her cough. The tube that her nurse uses a couple times an hour to suction the mucus out of her mouth.
But if you think of being hooked up to machines as something that keeps a dying person alive, that's not what's going on here. Olivia Welter is not dying. These tubes and machines keep her healthy.
Olivia Welter is 20 years old and gets all this life-saving medical care through a program provided by Illinois' Medicaid program. But it's a program for children. And when Olivia Welter turns 21, at the stroke of midnight on Nov. 9, she is no longer eligible for that care.
"There's not going to be any magic transformation between Nov. 8 and Nov. 9," says the young woman's mother, Tamara Welter. "She will be the same Olivia, with the same challenges and the same care needs."
There are about 600 children with severe disabilities in Illinois who get care through the same in-home program for "medically-fragile and technology-dependent" children, and thousands in other states around the country.
She breathes with the help of the portable ventilator on the back of her wheelchair. She can't speak; she can't move. Her eyes are wide open — she can't even close her eyelids. She has been severely disabled since birth.
John Welter says that when his daughter was a little girl, doctors told him to be ready for her to die.
"We were told very bluntly, and this was very hard to hear, that she would not live past 10 years of age, pure and simple," John says. "They told us that very directly."
So what kept Olivia Welter alive — and healthy — all these years? Better medical technology, for one thing, and the attentive, loving and constant care that she has received at home. That comes from nurses — who work 16 hours a day and are doing some treatment for the girl every several minutes — and from her parents, who take over for the other 8 hours.
"This is intensive care, 24 hours a day," says Helen Houchins, the day nurse, who sits by Olivia's side in the family's living room in a bungalow in Lincoln, Ill.
"You do what you have to do for your child," says Tamara Welter. She says her daughter's good health — and good nature — make the family's sacrifice worthwhile.
"I've had doctors, a couple of doctors, who have questioned a decision about doing something for Olivia, kind of on the basis of: Is she worth it? I've looked them in the eye and said, 'Don't you dare say that to me. Do you have children? What would you do for your child?' I think society can look at a person like Olivia and say, 'What can she contribute?'"
Tamara Welter blinks back tears and then talks about how her daughter responds when her parents or nurses walk into a room — by glancing at them with her eyes and flailing her arms. She sits with the family — and keeps her eyes toward the TV — as they watch video of her brother starring in community theater productions.
Her father says when no one else is in the house, he and Olivia turn up the country music.
"That's our guilty pleasure," he says. "And the more twangy the sound and the sillier the words, the more she loves it. And one day, we were listening to country music and some guy was leaving his girlfriend in his pick-up and I repeated the lyric and said, 'Kiss my bumper goodbye baby,' and she just erupted in giggles. And she thought that was the funniest thing."
Those moments have become fewer in recent years, as Olivia's seizures get worse.
Still, everyday, her parents tie her hair in one of her many, colorful bows — like the blue and orange one today that matches her clothes. They take her to church and to restaurants. Until last year, her nurses took her to school, although there was no way to tell what she was learning.
Cost Considerations
Olivia Welter is about as disabled as anyone you'll ever meet. Yet she's been hospitalized just twice in the last seven years and has had just one bedsore her entire life — and that was a dozen years ago.
Her doctor, Adalberto Torres, director of pediatric critical care at Children's Hospital of Illinois in Peoria, says that's the sign of exceptional care.
"They've kept her happy and healthy," Torres says of the Welters. "And one thing you can see with Olivia is when she is sad or happy."
When Olivia turns 21, the state changes how it measures cost. For an adult, the state says the alternative is no longer a hospital. It's a less expensive nursing home. The state will pay for the Welters to send her to one, although there are none nearby that would take her.
By keeping her out of the hospital and free of the health care complications common to quadriplegics, they save the state of Illinois from paying high medical bills
Tamara and John Welter are immensely grateful for what Illinois has done in the past. It's expensive to care for Olivia at home: nurses cost about $220,000 a year. Still, that's less than half the cost of what the state counts as the alternative — having her live in a hospital. The Welters figure they've saved the state millions of dollars by keeping her at home.
But when she turns 21, the state changes how it measures cost. For an adult, the state says the alternative is no longer a hospital — it's a less expensive nursing home.
The state will pay for the Welters to send her to one, although there are none nearby that would take her.
And even if they sent her to a distant nursing home, John Welter doubts his daughter would get the close attention she needs to stay alive.
"We cannot bear the thought of having Olivia in a home or a care home," he says. "Because we would be afraid that in any ten minutes, her life could be put in danger. Or less — in any three minutes. It would be agonizing, day to day to day."
Families Providing Care 'Like An Intensive Care Unit'
Torres, Olivia's doctor, agrees that it is best for Olivia's health for her to get the care she needs at home.
"These families do this in their home and they provide a level of care that is like an intensive care unit, not just live on a hospital floor, but an intensive care unit."
So the Welters will say no to the nursing home and will keep Olivia at home. But the state won't pay more than the cost of that nursing home. And that means the family will get about one half the state funding they rely upon now. They will no longer be able to pay for nurses.
They could hire less expensive personal care aides, instead. But here's another catch: By Illinois law, aides can't give Olivia her medicines. They also can't do the emergency care, like quickly replacing the breathing tube that keeps her alive if it pops out.
"The only way I think I could have an aide," says Tamara, "is if I am in the house with them, looking over their shoulder, and me doing most of the work."
And that's what state officials know that parents like the Welters end up doing — they become full-time caregivers and give that care at no cost to the state.
If the funding disappears, Tamara says she will quit her job as a cashier at the Cracker Barrel that she took to pay for her son's college. John might need to quit teaching history at the nearby college, but that job gives the family health insurance that pays for other parts of Olivia's care that the state doesn't pick up, including a medicine she used a few years ago that cost $7,000 a month.
Suing The State For Coverage
So the Welters are suing the state to continue the care Olivia has received since she was little.
And they have some support from the U.S. Department of Justice.
"Where would you rather live as a 21-year-old?" asks Thomas Perez, the U.S. assistant attorney general for civil rights. "Would you rather stay in the community with your family and your neighbors and all of the benefits of neighborhood and community? Or would you want to go into a nursing home? I'd ask any American: What is that choice?"
Perez has told the state of Illinois that it is in violation of federal law when it cuts off children. This summer, the Department of Justice intervened in a lawsuit filed by another family whose disabled child turned 21 in June. Olivia Welter's attorney added her to that lawsuit.
The Welters worried that at midnight, as Olivia turned 21, her nurses would be forced to walk out the door. But just over a week ago, the state of Illinois agreed to keep paying for Olivia's nursing care, at least for a little while longer. It might be a few months — or several months — while the lawsuit makes its way through the courts.
"This is government at its worst," says Robert Farley, the attorney for the Welters and several other families in Illinois. "Government says, 'Well, we don't do anything until the court rules,' but this stuff is life and death."
NPR asked to speak to an official from the Illinois Department of Healthcare and Family Services, but the agency declined, saying no one could comment because of the pending lawsuit by the Welters and other families.
States like Illinois are caught between wanting to do more for families and dealing with the reality of rising Medicaid costs.
"By the blessings of the advances of medical technology, we keep people alive who would have died in the past," says Alan Weil, executive director of the National Academy for State Health Policy, a Washington-based think tank. "That technology is very expensive, and someone has to pay for it. In good times, we are expansive and we put more resources in these programs; when budgets are tighter, there's concern about how much we're willing to spend, even for the most needy, the most obviously deserving of assistance."
State governments are dealing with record budget deficits — Illinois alone is facing a $15 billion shortfall. According to the Center on Budget and Policy Priorities, 46 states faced budget shortfalls this year and total state debt will hit $140 billion in the current fiscal year.
"States are in the worst fiscal situation ever," says Weil. "Meanwhile, the Medicaid roles have been increasing due to the economic downturn. Medicaid's a growing share of state budgets."
Families Fight For Home Care Funding
Every year, about 20 of the 600 children with severe disabilities in Illinois who get in-home care through the program that supports Welter age out. Some go to nursing homes; other families struggle to keep their children at home but often get overwhelmed by the care. Last year, a quadriplegic man in Peoria died at home just a few months after he turned 21 with bedsores so severe that his flesh was open down to his bone.
A few families, like the Welters, get attorneys and sue the state. Sometimes they lose, but lately they're more likely to win.
David Grooms, of Marseilles, Ill., won, but only after he sued the state when he got cut off when he turned 21 in 2005. His inherited metabolic disorder requires him to use a ventilator 24 hours a day.
His attorney, Karen Ward of Equip for Equality, a disability civil rights legal network, argued that it was medically dangerous to cut back on the level of nursing care that Grooms had relied upon all of his life and to instead use less skilled aides or to send him to a nursing home.
"The state says we do not deny care," says Ward, "But what they offer is an unsafe level of care." A court agreed and restored his 16 hours of skilled nursing care.
Grooms now lives in a large room at home with his father, also named David. The father provides care for the other 8 hours a day, but to look after his son, he had to quit work. Now he has no health insurance for himself, and hopes to stay healthy for a few more years until he is eligible for Medicare.
Still, David Grooms, the father, says he's proud that his son is doing well.
"He's happy, especially now that he has a girlfriend," he says. That was an unexpected outcome of the lawsuit — when the son lost his nurses, Jennifer Keith came to work for him as a personal care aide. She lost that job when David got his nurses back, but that allowed the romance to blossom.
They cuddle and Jennifer buries her face in David's long black hair as the sound of his respirator whooshes softly in the background. They watch TV together in David's room or send messages on their Facebook pages.
When Chad White-Smith, of Metamora, Ill, turned 21 in February, a court tried to find a compromise. An attorney for the state argued that the program for adults had a cap on how much it would pay, and the state didn't have unlimited resources to pay for more.
Chad's doctor, Adalberto Torres, who is also the physician for Olivia Welter, told the court that "it's just not safe" for White-Smith to rely upon aides instead of nurses. But the judge asked the family to try to find less expensive nurses and aides and see if they could make that work.
Returning from court one day last spring, Carmen Smith, Chad's mother, was frustrated.
"I understand our economic situation is not very good right now," she said, "but it's not acceptable for me to just say I'm willing to risk my son's life."
Chad, who has a form of muscular dystrophy and uses a respirator day and night, agrees.
"It's crazy. I don't know what they thought would change when I turned 21," he says. "I'm still the same. I'm not going to get out of this [wheel]chair."
His family is still fighting for more funding.
Care At Home: A New Civil Right?
The reason families have started to win their cases is a federal law: The Americans with Disabilities Act. In recent years, courts, including the U.S. Supreme Court, have ruled that the ADA gives many people a civil right to get their government-funded long-term care at home.
One result of the law, says Weil, is that even with those budgetary pressures, states still have a legal obligation to provide more home and community-based care.
In 1999, the U.S. Supreme Court ruled, in Olmstead v. L.C., that under the ADA, people with disabilities often have the right to live in the community rather than in institutions. Since then, other federal laws and policies have said that states have an obligation to provide more home-based care. The new health reform law is filled with incentives for the states to spend more.
But federal law is contradictory. An older federal law, the 1965 law that created Medicaid and Medicare, says states have an obligation to provide nursing home care. Home care programs are still optional.
One result is that the number of Americans on waiting lists to get care at home has more than doubled in recent years. Across the country, some 400,000 elderly and young people with disabilities are on waiting lists for home-based care.
On Olivia Welter's birthday, her family will gather for a quiet celebration. And they will make birthday wishes that a court agrees to tell the state to continue the level of care that has allowed Olivia to live at home and to celebrate birthdays with her family.
Michelle Dunlap never thought she'd be in that situation. In her mid-20s, she found herself living in Atlanta and stuck in a rehabilitation center with dozens of senior citizens, many of whom wouldn't speak to her and had trouble understanding her.
Michelle has cerebral palsy and she's been in a wheelchair since she was two years old. When she speaks, you can tell she has a disability, but she's sharp, intelligent and fluid. Almost everyone who meets her assumes that there's something wrong with her brain, that they shouldn't talk to her.
"When people look at me, they stop in their tracks," she told me. "They see me like there's a wall in front of me. All they see is the chair. They don't see the face or the person in the chair.
"Every Piece Of Humanity I Had Was Stripped'
Michelle wants to go back to school and study Criminal Justice. She's fully capable of living independently. But after she found herself without family or friends in Atlanta, and was hospitalized for dehydration, she ended up in the Crestview Health & Rehab Center on Springdale Road, and she couldn't leave.
The staff and patients at the rehab center were nearly 100% African-American, and for a disabled white lesbian, it wasn't the easiest transition. She lived in a small room with three other people, and was told when to eat, sleep and urinate. She tried to keep up with her homework but had limited access to a computer (with her disability, it takes Michelle longer to type than most people). For a person who strove to live independently, to go to school and have a career, the experience was devastating.
"It felt like I was in jail," Michelle said. "They did not have any regard that I was trying to better myself. Every piece of humanity I had was stripped."
The Crestview Health & Rehab Center declined to comment for this story.
What she thought was, at first, just a temporary inconvenience was beginning to look like the rest of her life. That's when she met Zak Topor.
'He Is An Angel'
The Atlanta Legal Aid Society is a nonprofit group that assists lower-income families with legal counsel. They were aware of Michelle and introduced her to Derona King, program coordinator for Citizen Advocacy of Atlanta & DeKalb. It was clear to King that Michelle needed someone to fight for her and help her regain her independence.
"When I hear about a person in their 20s who lives in a nursing home, that's a priority. That's an atypical way for a young person to live." King's job is to connect disabled people in need with a volunteer "advocate," someone who can speak up for one whose voice has been ignored.
"He doesn't take crap from nobody," Michelle said of Zak. "He's become kind of like my big brother."
Zak Topor and Michelle Dunlap
Zak Topor was immediately affected by Michelle's wit and ambition. He couldn't believe, however, the conditions she was living in.
"Four people stuck in this tiny, tiny room with just enough room for a bed," he told me. "They just treated her like she was a dog. The Atlanta Humane Society treats their dogs better. I couldn't believe it."
Michelle's connection with Atlanta Legal Aid and Zak's relationship as a citizen advocate were the biggest factors in getting Michelle out of Crestview and into her own home.
"I decided that if Michelle and I tried to fight them, that they were going to get worse in their treatment of her," Zak said. "I said, 'Michelle, I think they're escalating in their bad treatment of you. Let's just put all of our focus on getting you out.'"
And they did. The Atlanta Legal Aid Society was able to find an apartment for Michelle and took care of all the paperwork. Zak helped her prepare and pack for the big day.
"The day I got her out of there -- she just had clothes and few personal items and we got out. Her and I -- our elation -- we were both kind of like 'wow, we never have to come back here.' It was like we broke her out of prison."
Since late October, Michelle has lived in her own apartment, and she's getting back on the track she planned out years ago. She wants to pursue a degree in criminal justice, and potentially compete in the Special Olympics again, as she did years ago in Pennsylvania.
For now, though, she's putting her everyday life back together. She looks forward to getting a motorized wheelchair soon. Right now, however, money is too tight, and she continues to drive her manual wheelchair through the hilly streets of Atlanta.
