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A Drug for Down Syndrome

July 29, 2011
By DAN HURLEY

Early in the evening of June 25, 1995, hours after the birth of his first and only child, the course of Dr. Alberto Costa’s life and work took an abrupt turn. Still recovering from a traumatic delivery that required an emergency Caesarean section, Costa’s wife, Daisy, lay in bed, groggy from sedation. Into their dimly lighted room at Methodist Hospital in Houston walked the clinical geneticist. He took Costa aside to deliver some unfortunate news. The baby girl, he said, appeared to have [http://health.nytimes.com/health/guides/disease/down-syndrome/overview.html] Down syndrome, the most common genetic cause of cognitive disabilities,or what used to be called “mental retardation.”

Costa, himself a physician and neuroscientist, had only a basic knowledge of Down syndrome. Yet there in the hospital room, he debated the diagnosis with the geneticist. The baby’s heart did not have any of the defects often associated with Down syndrome, he argued, and her head circumference was normal. She just didn’t look like a typical Down syndrome baby. And after all, it would take a couple weeks before a definitive examination would show whether she had been born with three copies of all or most of the genes on the 21st chromosome, instead of the usual two.

Costa had dreamed that a child of his might grow up to become a mathematician. He had even prevailed upon Daisy to name their daughter Tyche, after the Greek goddess of fortune or chance, and in honor of the Renaissance astronomer Tycho Brahe. Now he asked the geneticist what the chances were that Tyche (pronounced Tishy) really had Down syndrome.

“In my experience,” he said, “close to a hundred percent.”

Costa and his wife had been trying to have a baby for a couple of years. Daisy’s first pregnancy ended in a miscarriage, which they knew can occur because of a genetic disorder in the fetus. When Daisy became pregnant a second time, Costa insisted they get a chorionic villus sampling, an invasive prenatal genetic test. But the procedure caused a miscarriage. (The test showed that the fetus was genetically normal.) Costa vowed that if there was a third pregnancy — this one — they would conduct no prenatal tests.

 Now, with Tyche bundled peacefully in a bassinet at the foot of Daisy’s bed, and Daisy asleep, Costa sat up through most of the night crying. He had gone into the research side of medicine in part to avoid scenes like this — parents devastated by a diagnosis. But by morning, he found himself doing what any father of a newborn might: hovering by the crib, holding his daughter’s hand and marveling at her beauty.

“From that day, we bonded immediately,” he told me during one of our many talks over the last year. “All I could think is, She’s my baby, she’s a lovely girl and what can I do to help her? Obviously I was a physician and a neuroscientist who studies the brain. Here was this new life in front of me and holding my finger and looking straight in my eyes. How could I not think in terms of helping that kid?”

With no experience in the study of Down syndrome, Costa took a short walk the next day to a library affiliated with Baylor College of Medicine, where he worked as a research associate in neuroscience. Reading the latest studies, he learned that the prognosis was not nearly as dire as it was once considered. Life expectancies had grown, education reforms had produced marked gains in functioning and — of particular interest to Costa — a mouse model of the disorder had recently been developed, opening the door to experimentation. He soon made a decision: he would devote himself to the study of Down syndrome.

In 2006, using mice with the equivalent of Down syndrome, Costa published one of the first studies ever to show that a drug could normalize the growth and survival of new brain cells in the hippocampus, a structure deep within the brain that is essential for memory and spatial navigation. In people with Down syndrome, the slower pace of neuron growth in the hippocampus is suspected to play a key role in cognitive deficits. Follow-up studies by other researchers reached conflicting results as to whether the drug Costa had tested, the antidepressant Prozac, could produce practical gains on learning tests to match its ability to boost brain-cell growth. Undeterred, Costa moved on to another treatment strategy. In 2007 he published a study that showed that giving mice with Down syndrome the Alzheimer’s drug memantine could improve their memory.

Now Costa has taken the next step: he is completing the first randomized clinical trial ever to take a drug that worked in mice with Down and apply it to humans with the disease, a milestone in the history of Down-syndrome research.

“This was a disorder for which it was believed there was no hope, no treatment, and people thought, Why waste your time?” says Craig C. Garner,  a professor of psychiatry and behavioral sciences and co-director of the Center for Research and Treatment of Down Syndrome at Stanford University. “The last 10 years have seen a revolution in neuroscience, so that we now realize that the brain is amazingly plastic, very flexible, and systems can be repaired.”

But the effects of that revolution on Down research may yet be cut short. A competing set of scientists are on the cusp of achieving an entirely different kind of medical response to Down syndrome: rather than treat it, they promise to prevent it. They have developed noninvasive, prenatal blood tests which would allow for routine testing for Down syndrome in the first trimester of a pregnancy, raising the specter that many more parents would terminate an affected pregnancy. Some predict that one of the new tests could be available to the public within the year.

Costa, like others working on drug treatments, fears that the imminent approval of those tests might undercut support for treatment research, and even raises the possibility that children like Tyche will be among the last of a generation to be born with Down syndrome.

“It’s like we’re in a race against the people who are promoting those early screening methods,” Costa, who is 48, told me. “These tests aregoing to be quite accessible. At that point, one would expect a precipitous drop in the rate of birth of children with Down syndrome. If we’re not quick enough to offer alternatives, this field might collapse.”

So recently was the genetic cause of Down syndrome established that just this past March, Costa actually met the widow of the French scientist, Jérôme Lejeune, who made the discovery in 1959. The scene of their meeting was a Paris conference, named in honor of Lejeune, where neuroscientists from around the world discussed progress into treatments for Down and related diseases. Such a conference would have been inconceivable when Costa entered the field 15 years ago.

“If you think about most genetic diseases, they’re usually caused by one gene, and in fact one mutation at one amino acid,” says Roger Reeves, a professor at the Institute for Genetic Medicine at the Johns Hopkins University School of Medicine. “But with Down syndrome, you have an extra copy of all 500 or so genes on Chromosome 21.” In the first two decades after Lejeune’s discovery, the very idea of grappling with those hundreds of triplicated genes scared off scientists from any serious effort to find a treatment for what they were soon calling “trisomy 21.” It just seemed impossibly complex. “The turning point,” Reeves says, “came when Muriel Davisson made her mouse.”

Davisson, now semiretired from Jackson Laboratory in Bar Harbor, Me., spent the 1980s developing a mouse, known as Ts65Dn, that had many of the traits associated with Down syndrome, including, incredibly, the distinctive facial characteristics associated with the disease and the same slightly uncoordinated gait.

Five years after publishing news of her mouse, Davisson received an e-mail from a young neuroscientist named Alberto Costa. Her work, he told her, opened the door for him to conduct meaningful new drug research.

“It was an epiphany, that, oh, this is a field where I can apply a lot that I’ve learned,” Costa says. “Science is usually unforgiving with people who try to change career paths, but it was a risk I was willing to take.” Having earned his Ph.D. studying the electrical and chemical basis of communication between brain cells, “I figured, O.K., if there is something that can be done in this field, it’s going to be done at that level of neuronal electrophysiology.” After months of reading the latest studies, Costa knew he needed Davisson’s mice.

“He twisted my arm till I took him into my lab,” Davisson says with a laugh. “I didn’t have funding. He wrote a grant to get the funding. He is very enthusiastic.” She also found out that he was a “perfectionist, and not very tolerant of people who aren’t perfectionists. He doesn’t do experiments without being sure he’s doing them right. When he makes a finding, you know that it’s real.”

Using Davisson’s mice, Costa’s 2006 study with Prozac produced cellular changes in the brain. In 2007, Craig Garner at Stanford took the next step, reporting behavioral improvements in Ts65Dn mice after weeks of drug treatment. (Earlier this year, a company he co-founded to pursue that strategy received funding from a venture-capital firm.) Four months later, Costa published his memantine study, showing that a single injection of the drug produced behavioral benefits within minutes, enabling Down-equivalent mice to learn as well as standard mice.

Memantine works, Costa hypothesizes, not by boosting the growth of brain cells but by normalizing how existing cells use the neurotransmitter glutamate. Because people with Down syndrome have three copies of all or most of the genes on Chromosome 21 instead of just two, they have about 50 percent more of any proteins encoded in that chromosome. One result, Costa has shown, is that the glutamate receptors of Ts65Dn mice are “hyperactive” — they overreact to stimuli. By responding to too many things, they learn too little; the signal is lost amid the noise. But giving memantine to quiet the noisy glutamate receptors, Costa has found, makes the brain cells react almost normally.

Other drugs that work on different systems in the brain have also shown benefits in the Ts65Dn mouse. In 2009, Dr. William C. Mobley, chairman of neurosciences at the University of California, San Diego, and one of the most active and visible researchers in the field, co-wrote a study showing that a combination of drugs designed to raise norepinephrine levels in the brain normalized the mice’s learning abilities. Most recently, last year the Nobel laureate Paul Greengard of Rockefeller University showed that memory and learning could be normalized in Ts65Dn mice by lowering levels of beta amyloid, the protein goop that has long been known to clog the brains of people with Alzheimer’s disease.

“There’s been a sea change in our ability to understand and treat Down syndrome,” Mobley says. “There’s just been an explosion of information. As recently as the year 2000, no drug company would possibly have thought about developing therapies for Down syndrome. I am now in contact with no  less than four companies that are pursuing treatments.”

Costa’s current memantine study began by testing memory and spatial learning in 40 young adults with Down syndrome. Daily, for 16 weeks, half received memantine pills, the other half a placebo. This fall, Costa will present preliminary results at a scientific meeting in Illinois on whether taking the drug made those with Down, in a word, smarter.

A half-hour from his office and laboratory at the University of Colorado-Denver School of Medicine, where he is an associate professor of medicine and neuroscience, Costa pulled into a parking space in front of his modest two-bedroom apartment. The figure of a girl in green dashed toward the car — and then vanished.

“Tyche,” Costa called to his daughter, “where’d you go?”

We both stepped out to look for her. I found her standing in front of another car, a Subaru Forester, waiting to get in. Dressed in a lime-colored shirt and skirt, the bangs of her mahogany hair framed by a hair band, Tyche stood just 4 feet 6 inches tall, with a round face, broad nose and heavy-lidded eyes.

Seeing my puzzled look, Costa explained that they also owned the Subaru — which he usually drove with Tyche. He led her to the Toyota we’d arrived in, where she sat down in the back seat. As Costa drove us to his office, I asked what she thought of her father’s work.

“He’s the greatest scientist,” she said, in a slurred, high-pitched voice. Then she added with a laugh, “And he builds evil machines.”

“That’s from watching too many cartoons,” Costa said. “Her favorite is

‘Phineas and Ferb.’ Of course, there’s an evil scientist in it who builds all kinds of machines.”

“Like the Smell-inator,” added Tyche, who turned 16 in June.

Back at Costa’s office, Tyche demonstrated to me what people with Down can be capable of even without medication. (Because she’s not an adult, Tyche is ineligible to participate in her father’s study.) On the whiteboard at the front of the room, Costa wrote out an algebra problem for her to solve: 8×2 – 7 = 505.

“She’s one of only two people with Down syndrome who I’ve ever known to be capable of doing algebra,” Costa said. “Normally we give her a problem before she goes to bed.” As she solved the equation, taking six steps to conclude that X equals 8, he said, “It’s basically instead of a bedtime story.” This past Christmas, he proudly noted, he gave her the Rosetta Stone language program for learning Portuguese, and by March she had finished with Level 1 and begun Level 2.

It turns out that with vigorous education and support, many people with Down do far better than once thought possible. Medical care of heart and other physical ailments associated with the disorder have likewise achieved significant benefits, doubling the average lifespan from 25 to 49, in just the 14 years between 1983 and 1997.

Still, with an I.Q. that is typically around 50 points lower than average — with some far lower and others, like Tyche, reaching higher — something more than education alone would be necessary to enable the majority of people with Down syndrome to live independently. Costa said he hopes that memantine might be that something, raising I.Q. noticeably, even if modestly. For him, the goal is to help people with Down syndrome achieve autonomy. “At some point, you want your children to have their own life,” he said. “It’s about independence.”

Costa was raised in Brazil, the son of a marine officer and a seamstress. When he was 14, his parents divorced. His father sent little support, and he and his two siblings lived with their mother in poverty. Perhaps inevitably for someone who had to struggle to rise above his circumstances, he comes across as intense and consumed by his work; he hasn’t taken a vacation since Tyche was 3. But he is also devoted to his daughter and wife, spending most of every weekend with them.

“She’s a great kid,” he said. “She has a very strong personality. In many ways she has features of a regular teenager. She doesn’t like me to get into her bedroom. She loves pop music and vampires.” Her relatively high functioning, he told me, is important to him. “If Tyche were really severely affected, I don’t know if I would have had the energy to go on with this business.” Then again, he admits to having paternal feelings toward all 40 young adults in his study, whose cognitive abilities vary widely. “At the end of the day,” he said, “their parents know someone really cares for their kid. It’s not an academic experience for me. It’s my life.”

In January, and again in March, a spate of news reports described new studies of the noninvasive blood tests that would allow pregnant women to check for Down syndrome without the risks and discomfort associated with chorionic villus sampling and amniocentesis. Few of the articles, however, took note of the profound unease many medical ethicists, including some who are ardently pro-choice, feel about the tests and how they might lead to a dramatic reduction in the Down syndrome population.

“Even people who are traditionally against abortion are sometimes willing to condone it when the abortion is of a fetus with a disabling trait,” says Erik Parens, a bioethicist at the Hastings Center in Garrison, N.Y. “But it’s important to recognize that there is a huge range of genetic disorders. In their own way, a lot of kids with Down syndrome flourish, and so do their families.”

Advocates of the new tests insist that parents will be given news of an affected pregnancy by a trained geneticist who will present the information fairly and fully. Critics, including Costa and many other parents of children with Down syndrome, say that such dispassionate approaches rarely happen in practice, with many obstetricians and genetic counselors providing unduly negative or misleading information.

But Stephen Quake, a professor of bioengineering and applied physics at

Stanford and a developer of one of the new tests, says: “It’s a gross

oversimplification to assume that these tests are going to lead to the wholesale elimination of Down-syndrome births. My wife’s cousin has Down syndrome. We just celebrated his 21st birthday. He’s a wonderful person. It’s not an obvious step that you would terminate an affected pregnancy.”

But Costa points to a falloff in the financing of Down-syndrome research since the prenatal tests have been in development. Although it’s difficult to compare the numbers, money from the National Institutes of Health dropped to $16 million in 2007 from $23 million in 2003, before creeping back up to $22 million in 2011. That’s far less than the $68 million slated for cystic fibrosis, which affects an estimated 30,000 people in the United States, at most one-tenth of the 300,000 to 400,000 people who have Down.

“The geneticists expect Down syndrome to disappear,” Costa says, “so whyfund treatments?”

Alan Guttmacher, director of the National Institute of Child Health and Human Development, denies that this is the calculus used by his organization. Yet he offered no clear answer when I asked him why about $3,000 in research dollars is spent by N.I.H. for every person with cystic fibrosis, compared with less than $100 for every person with Down.

“The number affected is a fair metric to use,” Guttmacher said. But, he pointed out, most of N.I.H.’s funding decisions are based on the strength of proposals coming from researchers. Advocacy groups for disorders like AIDS, autism and breast cancer have certainly played a role in their gaining increased funding, he said. And perhaps, he speculated, Down suffers from an image problem. “Part of it is that Down syndrome has been around for so long,” he said.

Representative Cathy McMorris-Rodgers, Republican of Washington, who co-founded the Congressional Down Syndrome Caucus soon after her 4-year-old son, Cole, was born with the disorder, has had little success in having money appropriated for Down research.

“I find myself wondering how N.I.H. really sets their priorities,” she told me. “I’m quite concerned that so many of the researchers in the Down-syndrome field have difficulty getting funded.” She continued, “My fear is that for some, they believe that it’s been taken care of throughprenatal diagnosis.”

Even Costa has struggled to secure financing. He lives with Tyche and Daisy in a rented apartment, having never felt he had enough job security to buy a home. At his laboratory, some of his most expensive and sophisticated equipment for studying Down syndrome remains in storage, literally gathering dust for want of financing to use it. One source of his research money has been the Anna and John J. Sie Foundation, based nearby in Denver, and run by Michelle Sie Whitten, whose 8-year-old daughter has Down syndrome. Three years ago, the foundation established a research institute at the University of Colorado in Denver, where Costa works. Plainly, though, he didn’t get into Down-syndrome research for the money. “There’s a reason why I’m doing what I’m doing,” he told me, nodding toward Tyche.

Not all parents of children with Down syndrome embrace Costa’s vision of a medical treatment targeting intelligence. In a recent survey conducted in Canada, parents were asked what they would do if there was a “cure” for their child’s Down syndrome. A surprising 27 percent said they would definitely not use it, and another 32 percent said they were unsure.

Meanwhile, the major not-for-profit advocacy groups devoted to Down syndrome spend little on research, instead preferring to lobby and offer parental support. Fresh energy has come from two relatively new groups determined to turn the situation around — Research Down Syndrome and the Down Syndrome Research and Treatment Foundation — but even they have so far succeeded in each raising only about $1 million a year, a fraction of the annual research budgets of many other disease-­advocacy groups.

Behind the ambivalence toward treatments, some parents say, is a fear that increasing their children’s intelligence might change their personalities— their very identities.

“Nobody would be against giving insulin for diabetes,” said Michael Bérubé, director of the Institute for the Arts and Humanities at Pennsylvania State University and author of the 1996 book [ http://www.nytimes.com/1996/10/27/books/we-can-handle-this.html ]“Life as We Know It,” published five years after his second son, Jamie, was born with the disorder. “But Down syndrome isn’t diabetes or smallpox or cholera. It’s milder and more variable and more complicated. I’d be very leery of messing with the attributes Jamie has. He’s pretty fabulous. At the same time, I’m not doctrinaire. If you’re talking about a medication that allows people to function in society and hold jobs, how can you be against that?”

The parents I met whose children participated in Costa’s study expressed little of Bérubé’s ambivalence. Peggy Hinkle told me about changes she saw in her 26-year-old daughter. “When Christina was on the pills, she told me one morning about a dream she had. She gave me five full, complete sentences. Which is a very big deal. Not only that, she left the room and came back later and told me another sentence about the dream. And she started to do Jumble word puzzles in the newspaper. I don’t know if she was on the drug or on placebo, but after five weeks there was a change. Boom. That’s why we participated: to expand her horizons.”

For his part, Costa has no doubts about the work to which he has devoted the last 15 years of his life. “If you have a disorder that’s changing the function of an organ, which in this case is the brain, and you use a medication to bring the function of that organ closer to where it was meant to be from millions of years of evolution, that’s as fair as treating any other disease,” he said. “I don’t see it as any different.” If his current study is successful, Costa’s ultimate goal is to test it in youths, like Tyche, during the crucial early years of development. Costa is quick to point out that he has not offered her memantine outside the study, and he discourages other physicians from doing so until its safety and effectiveness is proved. But from his perspective as both a researcher and a father, he said: “The sooner you start, obviously, the greater would be your hopes. All I know is, the clock is ticking.”

Dan Hurley (hurleydan1@gmail.com) is the author of “Diabetes Rising:
How a Rare Disease Became a Modern Pandemic, and What to Do About It.”
Editor: Ilena Silverman (i.silverman-MagGroup@nytimes.com)
This article has been revised to reflect the following correction:
Correction: July 31, 2011
An earlier version of this article misidentified a neurotransmitter that Dr. Costa says is affected by the drug memantine. It is glutamate, not NMDA. That version also misstated, in one instance, Dr. Costa’s surname as Castro.

News Big shifts lie ahead for N.J. Medicaid

Sunday July 17, 2011
BY LINDY WASHBURN STAFF WRITER The Record

Elderly and disabled Medicaid patients and the people who care for them are facing some of the biggest changes in the history of the government insurance program as a result of the new state budget.

Nearly all must choose a Medicaid HMO quickly, a shift in the way their health care has been managed that is causing uncertainty and anxiety.

Four private HMOs approved by the state are working overtime this summer to enroll 45,000 people and take over the reimbursement of millions of dollars to thousands of providers. Meanwhile, doctors, wheelchair suppliers, home health-care agencies and medical day-care programs for adults and children are joining HMOs many had previously avoided — and they're hoping the private HMOs will be as reliable as the state when it comes to regular payments.

The shift to HMOs will affect Medicaid patients who have home health aides or attend medical day care and those with complicated medical needs. It will affect their prescription drug coverage. Nursing homes will be paid less.

The changes come as the state tries to rein in Medicaid costs, which have grown 22 percent over five years.

Rather than cut benefits or kick people out of programs, the state is turning to private HMOs to care for the aged, blind, disabled and chronically ill, according to Commissioner Jennifer Velez of the state Department of Human Services. The HMOs will coordinate care better, eliminate duplicated services and reduce costs, she said — with better outcomes.

"Medicaid is ripe for reform," Velez said when she explained the changes to legislators. "The state must redesign the program if we expect to protect benefits to the most vulnerable."

But advocates are concerned that the state's neediest residents may suffer.

"We have never had a situation where the people with the most complex needs were required to get their care through a managed-care organization," said Beverly Roberts, an advocate for those with developmental and intellectual disabilities at The Arc of New Jersey.

One mother described a team of nurses, doctors, specialists and others "spanning three states" who have enabled her 14-year-old daughter, born with both Down syndrome and pulmonary hypertension, a life-threatening heart-and-lung condition, to thrive.

"Our team of specialists would never all be in one network," she said as she visited Congress to defend the importance of Medicaid, "and our family would be bankrupt trying to pay for this care."

In Englewood, Marcy Grayson said she is already suffering from the changes in the program that covers the co-pays for prescriptions.

She is also very worried that an HMO will cut aspects of her 92-year-old father's care, like the home health aide who comes in to help her father while she is at work. "Who is going to look out for people like my dad if the state won't," she asked.

At the Wayne adult day services program of Christian Health Care Center last week, a nurse checked blood pressures as the activities director led 29 men and women in a word game. The daily, five-hour program monitors the participants' medications, provides a hot lunch and plenty of opportunity to socialize, while allowing them to live at home or in the community.

"Without what we're doing, some of these people would be hospitalized or institutionalized," said Hazel Whitty, the administrator. She asked how managed-care companies would squeeze savings from such programs "without cutting corners."

Horizon Blue Cross and Blue Shield of New Jersey, one of the state-approved HMOs, already enrolls thousands of Medicaid patients. "We're not taking away any benefits," said Karen Clark, chief operating officer of its Medicaid division. "And New Jersey continues to be really generous in terms of eligibility."

The financial pressure on the state is intense. Medicaid accounts for about $5 billion of a $29.7 billion budget and grows like Pac-Man.

A nearly $1 billion federal funding boost to shore up the program during the depths of the recession ended this year. Unemployment remains high, at 9.3 percent, leading to more people who need coverage. The program now insures 1.2 million — more than 1 in 7 state residents.

"Medicaid's growth is out of control," Governor Christie said during his annual budget address.

The belt-tightening in Medicaid in the budget that took effect July 1 is dramatic — touching previously sacrosanct groups. State budget-cutters scoured the nooks and crannies of the Medicaid system, eliminating, for example, prescription drug co-payments they paid for poor elderly with Medicare Part D. They told nursing home owners that, though they still must keep beds open for 10 days when residents are hospitalized, the state is no longer going to pay them for doing so. Then they told groups of Medicaid recipients who'd previously been given exemptions from managed care that they had to sign up.

And that's just the beginning.

In the most talked about provision of a proposed "global waiver" that still must get federal approval, enrollment in a popular subsidized insurance program for families will be closed to parents who earn more than 25 percent of the federal-poverty guidelines, or $5,587.50 a year for a family of four. That's $107 a week. More than 15 hours of work a week at a minimum wage would disqualify the parents in such a family from subsidized insurance.

Critics of this change — and there have been many — say it's a double whammy because parents are less likely to sign their kids up for insurance if they can't get it, too.

The waiver proposal would also require long-term care and behavioral-health Medicaid patients to join HMOs. The intent is to encourage as many as possible to be cared for in the community or their own homes, rather than in institutions.

The budget did have some good news for community health centers that serve the poor and for hospitals. The New Jersey Primary Care Association, whose members include health centers in Hackensack, Garfield, Paterson and Passaic, was spared any funding cuts.

"For us, it's a bright spot," said Katherine Grant-Davis, its president. "People need some place to go, and not to the emergency room," she said. The centers' philosophy is to turn no one away, she said.

The New Jersey Hospital Association wasn't complaining about a $10 million increase in charity-care funding, but it is trying to talk officials out of the requirement that hospitals charge Medicaid patients $25 when they use the emergency room inappropriately. It will be hard to collect the money from such patients, said Randy Minniear, senior vice president.

E-mail: washburn@northjersey.com

Olmstead Champion Meets the President

Posted by Sue Jamieson on June 22, 2011 at 02:06 PM EDT

The memories of living in institutional settings since the age of 13 will always be with Lois Curtis even though her life today is beyond what she ever could have imagined when she made the first of many brave phone calls to my office at the Atlanta Legal Aid Society saying, “I want to get out!” The journey (and struggle) from that day includes an historic Supreme Court decision, a home of her own and a successful career as an artist. And now, a meeting with President Barack Obama in the Oval Office as we observe the 12th anniversary of the Olmstead decision.  

The Olmstead story began long before the Supreme Court decision. Lois and another plaintiff, Elaine Wilson (who passed away in 2004), were in a state psychiatric hospital in Georgia. They filed suit in 1995 seeking disability services in the community. On the fateful day that brought us to Washington D.C., those of us who had worked on the case for five years were perhaps more amazed than Lois that we were climbing the steps of the United States Supreme Court, moving through hundreds of persons with signs, many in wheelchairs, who had spent most of the previous night in a disability civil rights vigil. The lawyers were focused on the frightening possibility that the Court would reverse the successful decisions of the lower courts and the exciting possibility that it wouldn't. Lois, however, tends to take things in stride and understands the joy of the moment. Since she was not in a state hospital but enjoying a trip to D.C. with her friends and supporters, her focus was on that day of freedom and adventure. In fact, she insisted on a tour of the White House that day, asking if there was a chance she might see the President. Lois and Elaine, as well as the intense commitment of the disability community around the country, were truly our inspiration. And, as we all now know, the U.S. Supreme Court eventually held that the unjustified institutional isolation of people with disabilities is a form of unlawful discrimination under the Americans with Disabilities Act, thus taking a giant step forward for the millions of people with disabilities across the country. 

Lois’ story did not end after that landmark Supreme Court decision. In fact, that decision launched a new journey. After living in staffed residential homes since her release from the institution, Lois now rents a beautiful home in the Stone Mountain area of Georgia. She chose a fellow artist and friend to be her roommate. In 2010 a non-profit microboard was created to help foster Lois' continuing independence. A microboard is a group of friends set up to assist with the services and supports for one individual. In her case, Lois' microboard was critical to helping her gain access to a Medicaid waiver program for self-directed services.

Lois’ career as an artist has taken off. Initial support from a U.S. Department of Labor customized employment grant in 2004 drew advocates to her side that resulted in several one-woman exhibits and recognition within the arts community for her uninhibited artistic expression.

President Barack Obama looks at a painting presented to him by artist Lois Curtis, center, during their meeting in the Oval Office, June 20, 2011. Joining them are, from left, Janet Hill and Jessica Long, from the Georgia Department of Labor, and Lee Sanders, of Briggs and Associates. (Official White House Photo by Pete Souza)

One painting was recently auctioned for $1,400! But Lois doesn’t care about that. When I asked her what her artwork means to her, she responded, “My art been around a long time. I came along when my art came along. Drawing pretty pictures is a way to meet God in the world like it is.”

Lois is once again taking the lead and helping those who choose to integrate into

the community. She wants to show parents and family members that with the right supports and services, life in the community is not only possible but can also be very rewarding. The Obama Administration is helping to make this possible by strongly supporting the full implementation of the Olmstead decision, helping ensure the full integration of people with disabilities into the work, recreational, and social life of our society.  

On June 20, 2011, 12 years after her visit to the Supreme Court, Lois has not only seen the President but presented him with a gift of one of her original paintings in the Oval Office, in the style of a visiting dignitary. The "Girl in Orange Dress" is one in a series of three pastel self portraits Lois created since she has no photographs to mark her childhood.  

Sue Jamieson is an attorney with the Atlanta Legal Aid Society Mental Health and Disability Rights Unit. She was the lead attorney in Olmstead v. L.C.

Emotion high over NJ plan to close disability home

By GEOFF MULVIHILL The Associated Press

VINELAND, N.J. — Karen Lee Colletti has severe autism, speaks only a few words and needs a diaper. When she was 27 and her parents felt they couldn't care for her at home any longer, they moved her to the Vineland Developmental Center, which cares for women with developmental and intellectual disabilities.

That was 29 years ago. Now, her 80-year-old father, Vito Colletti, fears the state's plans to close the center by 2013 will happen, pushing his daughter out of a place that he thought she could live for the rest of her life. It's discomforting for a man who's come to rely on the care she gets at the state institution. After a hard time difficult adjustment from a move last month from one part of Vineland's campus to another, he fears a longer move to one of the state's remaining institutions would "drive her bananas."

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FILE - In this April 26, 2011 file photo, worker Marion Gaines, front right, reacts with others in a large gathering of workers and supporters as they listen to Rev. Al Sharpton, in Vineland, N.J., outside the Vineland Development Center which houses 350 women with severe disabilities. New Jersey Gov. Chris Christie's proposed budget calls for saving $1.6 million a year by closing the center, and Sharpton urged the workers in Vineland to demand justice for themselves and the center's residents. The decision to close the center has stirred emotional debate. (AP Photo/Mel Evans, File)

ABUSED AND USED

June 6, 2011 By DANNY HAKIM

A seemingly inexplicable willingness by supervisors to tolerate abuse seems to pervade institutions that house residents with developmental disabilities, a New York Times investigation shows.

New York State and the federal government provided $1.4 million annually per person to care for Jonathan and the other residents of the Oswald D. Heck Developmental Center, a warren of low-rise concrete and brick buildings near Albany.

Yet on a February afternoon in 2007, Jonathan, a skinny, autistic 13-year-old, was asphyxiated, slowly crushed to death in the back seat of a van by a state employee who had worked nearly 200 hours without a day off over 15 days. The employee, a ninth-grade dropout with a criminal conviction for selling marijuana, had been on duty during at least one previous episode of alleged abuse involving Jonathan.

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Michael Carey brings flowers to his son Jonathan's grave at the Bethlehem Cemetery in Delmar, N.Y.

Video: Witness to Abuse: The Worker's Story

By NANCY DONALDSON, NATHANIEL BROOKS and DANNY HAKIM

Frustrated by the state's failure to respond to her reports that residents were being abused, a worker at O.D. Heck, Mary Maioriello, surreptitiously recorded a conversation with top agency officials.

March 12, 2011Nathaniel Brooks for The New York Times

At State-Run Homes, Abuse and Impunity

By DANNY HAKIM

Decades after New York emptied its warehouses for the disabled, the current network of small group homes operates with scant oversight and few consequences for abusive employees.

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.

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