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. Read the rest of this entry »

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.

Read the rest of this entry »

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

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)

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)

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. 

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.

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.” Read the rest of this entry »

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.

Click here to read the complete story of Jonathan Carey.

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.

A group home in Hudson Falls, N.Y., where a worker was said to have sexually assaulted a severely disabled woman.

March 12, 2011Nathaniel Brooks for The New York Times

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.

Click here to read the complete story of At State-Run Homes, Abuse and Impunity.

The NJCDD invites you to say no to the R-Word at the 1st annual Developmental Disabilities Awareness Day.   Discounts available on admission call 732-928-2000 x2850- Special Events.

For more information contact:
NJ Council on Developmental Disabilities 800-216-1199 or Six Flags Great America