Elias Tembenis, age 7
Continental walk to fight autism
CARRYING A MESSAGE ACROSS AMERICA
By Lisa D. Welsh TELEGRAM & GAZETTE STAFF
WORCESTER — “One step at a time” is an apt description of life now for Harry and Gina Tembenis, who lost their only child, 7-year-old Elias, last November.
It also defines The Elias Tembenis Walk for Autism, a 3,000-mile walk across the country that their good friends, Robert Williams and Bobby Genese begin today in San Francisco.
Elias was diagnosed with autism when he was four months old. After watching the family care for Elias and then struggle to come to terms with the boy’s short life after what his father called an “absolute monstrous seizure,” the pair offered their help.
“They just came to us and said ‘we feel really bad about what happened,’ ” Mr. Tembenis said. “We thought they would make a donation in his name or have a fundraising party. And then they said ‘We want to walk across the country to raise awareness about Elias’s autism.’
“I’m honored, humbled and I’m very blessed to have them do this,” he said.
According to Mr. Tembenis, Elias began having seizures after his four-month checkup, when he received four vaccinations in one day for nine different diseases. Elias is one of 4,900 children represented in a lawsuit filed by Autism Omnibus that alleges vaccines caused autism in the children.
On Nov. 9, 2007, a landmark court decision came in the vaccine-autism debate when the division of vaccine injury compensation of the federal Department of Health and Human Services conceded the case of Hannah Poling v. Sec HHS, stating that the 9-year-old Georgia girl’s vaccinations aggravated her mitochondrial disorder, resulting in “features of autism spectrum disorder.”
Mr. Tembenis said that like his son, Hannah Poling appeared healthy until she received four shots for nine diseases in one day and suffered her first seizure. Should the Tembenis family receive money from the suit, it will be capped at $250,000, which would not cover the $400,000 they have in medical bills.
“This isn’t about getting rich. It’s about accountability,” Mr. Tembenis said. “The doctors were pretty tight-lipped, but being parents, we knew something was wrong.
“What the guys are doing goes a long way in leaving a legacy to our son,” he said.
Both 36 and single, Mr. Williams and Mr. Genese last week packed their belongings and headed to California. To make the nine-month trek, Mr. Williams took a leave of absence from Diorios, the hair salon owned by his family on Plantation Street and from his work as a rigger at the DCU Center and Hanover Theatre for the Performing Arts.
Mr. Genese is a familiar boxer in the city. He fought most recently in an exhibition bout against Jose Antonio Rivera at the Palladium during the annual event presented by the Worcester Police Gang Unit Boxing Club. He left his job at Jillian’s on such good terms that the company’s franchise in San Francisco held a sendoff party in the walkers’ honor Sunday.
“What they’re doing means the world to us,” said Heather Nejaimey, the sister of Gina Tembenis. “They’ve put light into a situation that was really dark.”
During their walk along Route 50 and the American Discovery Trail, each will carry a backpack of basic supplies. On their way out to California, they buried water in the desert and food is being mailed to post offices situated every 50 to 70 miles. They expect to end their walk in Washington, D.C., before Christmas.
With support from the National Autism Association, fundraising events will be held along the walk to help them reach their goal of raising $1 million.
But between a couple of sendoff events in Worcester, and a few corporate sponsors, they raised $22,000 before they even took one step in a warm-up walk over the Golden Gate Bridge yesterday.
“It was a pretty thrilling experience,” said Mr. Williams. “It was foggy, so you couldn’t see the top of the bridge, but it was still pretty breathtaking.
“I’m feeling excited and overwhelmed. … After all of the planning, determining where to have the meal drops, burying the water last week in the desert, thinking of the gear that I want to be on my back for the next six months. It’s very surreal.”
Included in that backpack is some solar-powered equipment, including digital recording cameras that will document their travels.
Miss Nejaimey will post the pictures on www.myspace.com//eliastembeniswalk. Spectrum Magazine, an online publication for families of people with autism and developmental disabilities, is featuring them in its June issue at http://spectrumpublications.com and ABCNews.com is doing a profile at the end of June.
Benji Heil, age 7
Associated Press
WISCONSIN RAPIDS, Wis.— The discovery of a 7-year-old autistic boy's body in a pond not far from his home Tuesday ended a community search effort that drew hundreds of volunteers each day since he disappeared last week.
Even those who weren't in on the organized search for Benjamin "Benjy'' Heil stayed on the lookout for him since he vanished Thursday, said town of Nekoosa resident Darcy Peckham, 33.
"It's a tragedy that this whole community is going to have a hard time getting through,'' said the mother of six. "I've got children of my own that age, and it just makes you realize how close that family is. You realize that, wow, in a split second it can all be gone.''
Wood County sheriff's Lt. Dave Laude said the boy was found about 11 a.m. in a pond adjacent to Ten Mile Creek less than a quarter mile from his town of Saratoga home. A search dog led to the discovery, he said.
Wood County Coroner Garry Kronstedt said an autopsy was scheduled Thursday in Portage.
The boy had been playing in the basement when his family realized Thursday evening that he was gone and called authorities.
Hundreds of people turned out each day to look for the boy.
Denis Martez, age 12
Red flags overlooked in 12-year-old's prescription drug death
The prescription-drug death of 12-year-old Denis Maltez raises troubling questions about the state's safety net for disabled kids.
BY CAROL MARBIN MILLER
cmarbin@MiamiHerald.com
Born with autism, 12-year-old Denis Maltez was ``hyper, needy, pesty,'' his psychiatrist wrote following a May 2007 visit.
Dr. Steven L. Kaplan solved the 70-pound boy's problems with a prescription pad, writing orders for two different anti-psychotic drugs along with a tranquilizer and a mood stabilizer -- two of them in the highest doses recommended for adults, records show.
When state medical regulators sent Kaplan letters suggesting the dosages were worrisome, he ignored them.
Two weeks after Kaplan last saw the boy, on May 23, 2007, Denis simply stopped breathing. The Miami-Dade medical examiner's office attributed the death to a life-threatening side effect of over-medication, records show.
``I . . . never had any suspicion he was being overmedicated,'' Kaplan testified in a November 2009 sworn statement.
A review of records from three state agencies, however, makes clear that plenty of other people did.
Though a number of Florida agency heads have wrung their hands about Kaplan's methods for more than three years, he has never been disciplined. The state Medicaid program, which insures the needy, asked the state Board of Medicine to investigate Kaplan in 2008, but the complaint was dismissed, records show.
Disability administrators encouraged underlings to send him new patients just as the agency's chief described his practices as ``very disturbing.''
QUESTIONS
Florida's regulatory history with Kaplan -- which includes four state agencies and thousands of pages of records -- raises important questions. Among them: Does the state have an adequate regulatory scheme for doctors who work with the most vulnerable? Can the state effectively oversee doctors who reject advice from their peers?
``Three agencies all raised concerns and red flags, and each agency was saying this is somebody else's job to take it a step further,'' said Department of Children & Families Secretary George Sheldon. ``I'm not sure what the solution is.''
Sheldon blamed much of the problem on historically poor billing rates for doctors who are paid by Medicaid, the state and federal insurance program for the poor and disabled.
``I think it's difficult to recruit in the Medicaid arena any child psychiatrist,'' Sheldon said. ``The rates really do have an impact on who is willing to do it.''
Kaplan, who mainly practices in Miami-Dade, declined to speak with a Miami Herald reporter.
With as many as 800 patients in South Florida -- all but one percent of them disabled or impoverished children insured by either Medicaid or Medicare -- Kaplan is listed by the Agency for Healthcare Administration as number five on their list of doctors whose mental health prescriptions were red-flagged by an oversight group.
Denis was 8 when his volatility and violent outbursts prompted his mother, Martha Quesada, to move him into a sparkling new Miami group home called Rainbow Ranch. Administrators for the Agency for Persons with Disabilities had recommended the home, run by a man who had once pleaded guilty to practicing medicine without a license.
In May 2006, the owner of Rainbow Ranch discontinued Denis' treatment by a team at Jackson Memorial Hospital and instead hired Kaplan, who already was treating the group home's other residents, Kaplan said in a deposition taken Nov. 2 by Quesada's attorney, Howard Talenfeld.
In testimony that is part of an ongoing lawsuit by Denis' mother, Kaplan acknowledged that he never once spoke to Quesada before prescribing powerful mind-altering drugs, and never sought nor obtained her consent for treatment.
``I was told that the boy's mother had abandoned him,'' Kaplan testified. In fact, Quesada had never been stripped of her parental rights by the state, and had remained actively involved in Denis' care.
Denis was prescribed 20 milligrams of Zyprexa, 800 milligrams of Seroquel -- the highest adult dose for both anti-psychotics, a reviewer said -- one-half milligram of Klonopin, a tranquilizer and 2000 milligrams of Depakote, a mood stabilizer -- also a high dose for Denis' 70-pound frame. Neither of the anti-psychotic drugs has been approved for use with children.
In his deposition, Kaplan testified he was aware that the two anti-psychotic drugs both carried an ``increased risk of sudden cardiac death.''
By early July, 2006, group home workers had told Kaplan the boy was ``lethargic and unresponsive in the morning,'' Kaplan said in his deposition. On July 17 that year, teachers at Denis' school noted that he was sleeping through class, and he was taken to Miami Children's Hospital for emergency medical treatment.
That same month, on July 24, Kaplan received a letter from the Medicaid Drug Therapy Management Program for Behavioral Health, a program of the Agency for Health Care Administration run by the University of South Florida, questioning his medication of Denis. On four ``key'' indicators, the letter said, Kaplan's prescribing of drugs to Denis fell outside generally accepted practices.
And AHCA was not the only state agency with concerns.
DCF received its first report involving Denis on Oct. 26, 2006. The report made some findings of medical neglect based on a teacher's complaints that Denis was ``sleeping in class, shaking and trembling.''
And on Jan. 9, 2007, DCF received another report that, among other things, Denis had ``a history of being overmedicated -- based on an August 2006 visit to Baptist Hospital with symptoms of overmedication. ``Denis was sleepy because he was over-medicated,'' a DCF investigator was told.
In all, DCF conducted six investigations of Denis' well-being, some of them including allegations that Denis was being over-drugged, an Agency for Persons with Disabilities report says. Sheldon said his agency had received a total of eight calls to the state hot line about Kaplan.
WARNINGS
The disabilities agency also had been warned that Kaplan's patients appeared to be drugged.
An April 2007 memo from an APD administrator said a number of caregivers in Miami had expressed concerns that Kaplan's patients at Rainbow Ranch appeared to be overmedicated. A former group home manager said she found ``clients always asleep and barely walking.'' The mother of one boy said he went home for Thanksgiving all doped up.
Denis last saw his psychiatrist on May 10, 2007. In progress notes from the visit, Kaplan wrote the boy was sleepy during the day, and school officials felt he was drugged. He added: ``Hyper, needy, pesty.''
Denis died two weeks later, on May 23, 2007. He was 12.
In his deposition, Kaplan said he is not responsible for Denis' death. ``I don't believe he died of anything that I did,'' he said.
After Denis' death, APD hired a psychiatrist, Jorge J. Villalba, to study the group home's practices. He reported ``overmedication with sedation of clients,'' noting that 99 percent of the group home residents were on an anti-psychotic drug.
Villalba wrote that Denis had been on three different mental health drugs, two of them in the maximum dose, and that ``in combination, all three of these agents have additive effects as a central nervous system depressant.'' The drugs, he added, ``may have been contributing factors in the client's death.''
The following December, the Miami-Dade medical examiner's office concluded Denis did die of overmedication, from a disorder called Serotonin Syndrome.
A week after the medical examiner's report was released, on Dec. 28, 2007, the then-head of the disabilities agency, Jane E. Johnson, called the case ``very disturbing -- especially if that psychiatrist is still providing services through [the] Medicaid state plan.''
During the next two years, administrators at both the healthcare and disabilities agencies continued to monitor Kaplan's activities, writing dozens of e-mails and reports:
• A nurse on staff at APD noted on Feb. 5, 2008, that one boy under Kaplan's care ``was taking 10 medications in total,'' including two anti-psychotic drugs and two tranquilizers. ``All of the medication listed cause somnolence,'' the nurse wrote.
• Thirteen days later, on Feb. 28, 2008, Kaplan received an ``academic detailing'' visit by a pharmacy expert from the University of South Florida, as part of the university's effort to oversee problematic prescribers for the state healthcare agency. Though Kaplan was reportedly ``very courteous and professional,'' the reviewer noted, ``he didn't appear familiar with the material or interested in the guidelines.''
• In mid-March 2008, several disabilities administrators exchanged e-mails voicing worries about Kaplan. ``He's still practicing and we're concerned,'' Chuck Faircloth, APD's inspector general, wrote on March 12.
The next day, Evelyn Alvarez, a top Miami administrator, wrote: ``Our medical case manager as well as I continue to have concerns regarding the abundance of meds that he is prescribing to some of our consumers.''
• Two months later, another USF monitor visited Kaplan in his office. Kaplan, he wrote, said that his patients are ``schizophrenic and become violent, aggressive, dangerous'' -- making such medication necessary. ``Provider states that he does not use antipsychotic medication for sedation,'' a report says.
• In June, 2008, while both agencies were expressing concern about Kaplan's use of mental health drugs, at least two APD administrators suggested he be considered for new patients when scores of disabled people were to be moved from a large institution in Fort Myers into group homes.
``He has lots of clients, so he may well qualify from the point of view of a large and varied practice,'' wrote Alvarez, who only three months earlier had expressed concerns.
• A USF monitor once again visited Kaplan on May 15, 2009.
``He said he did not find the time to deal with non-important things such as paperwork,'' a report says of the visit. ``He said he had been practicing long enough to know how to treat his patients and was tired of being told what to do.''
STATE CONCERNS
In his deposition, Kaplan acknowledged he received ``hundreds'' of letters from the state suggesting he revise his prescribing practices. ``I didn't think it required any kind of response,'' he said. He later added: ``I never thought of myself as a red-flagged physician.''
Talenfeld, Quesada's lawyer, urged healthcare and disability administrators in a letter to better protect disabled children, ``who are powerless to protect themselves from being unnecessarily drugged for the convenience of staff. . . . Without proper oversight and action by your respective state agencies, these individuals will continue to be in harm's way.''
Administrators at AHCA declined to discuss the agency's history with Kaplan at length. In an e-mail to The Herald, the agency's spokeswoman, Tiffany Vause, said it was ``extremely difficult to measure the quality of prescribing practices'' based upon Medicaid claims.
The USF program, she said, enables doctors to explain their practices -- which may be entirely appropriate -- or to change their habits once they are better informed.
``Dr. Kaplan is being monitored through this system and has received feedback from the USF clinical staff, Vause said. ``The agency is closely monitoring this physician's claims and the unique patient caseload he treats and will take appropriate action. This can include termination from the Medicaid program.''
Read more: http://www.miamiherald.com/2010/04/18/v-fullstory/1586109/red-flags-overlooked-in-prescription.html#ixzz0wQ8UBLwt
By Jennifer K. Woldt • of The Northwestern • August 17, 2010
More than three years after an Oshkosh middle school teacher died, attorneys are still arguing whether she died from injuries she received while working with an autistic student.
At stake are death benefits a state commission says the Oshkosh School district and its insurance company owe her family.
Laurie Ann Hoopman, 48, was found dead by her children March 20, 2007, days after her co-workers said they saw a student kick her in the chest.
Her family argues Hoopman died due to injuries she received when an autistic student in her Carl Traeger Middle School class kicked her in the chest multiple times in the days before her death. The Oshkosh school district and its insurer said the cause of Hoopman's death is unknown.
"We're just trying to get the truth out there," Laurie Hoopman's husband, Steve Hoopman, said Monday. "Everybody's not accepting the truth that we know is out there."
Attorneys representing the Oshkosh School District and Acuity Insurance Company, filed an appeal in Sheboygan County Circuit Court last week that seeks to reverse a state Labor and Industry Review Commission's ruling that the school district and insurance company pay Hoopman's family death benefits and funeral and burial expenses along with making a payment to the state's work injury supplemental fund.
Officials from the Oshkosh school district declined comment and others did not immediately return a phone call seeking comment on this story Monday.
An administrative law judge presiding over a state Department of Workforce Development Worker's Compensation Division hearing ruled it was unclear what caused Hoopman's death and therefore benefits did not need to be paid out. On appeal, the Labor and Industry Review Commission reversed the decision and ordered the family was entitled to the benefits.
A circuit court judge will review the evidence that was presented during those hearings before making a ruling, said Terence Bouressa, the De Pere-based attorney representing Hoopman's family.
The appeal has been filed in Sheboygan County, where Acuity Insurance Company is based, but Bouressa said these types of action are usually heard in the county where the injury occurred or where the employee or employer is based. He said he is planning on filing a motion to see if the case could be moved to Winnebago County Circuit Court.
Bouressa is unsure when a decision would be made, but said it could take four to six months.
Jennifer K. Woldt: (920) 426-6676 or jwoldt@thenorthwestern.com.
Jonathan Carey, age 13
Welcome to the Jonathan Carey Foundation.
Lisa and I, the parents of Jonathan, would first like to thank everyone for your love, your prayers, and your encouragement throughout this extremely difficult time, and for all your support as we were fighting for Jonathan’s Law. Our hearts are broken and the pain of missing Jonathan is excruciating at times, but we know that Jonathan is happy and safe with our Lord Jesus in Heaven for all eternity, which helps us tremendously.
Right now we must move forward. We are compelled to help other vulnerable children, and to help prevent other children from suffering abuse and neglect like Jonathan suffered. We would like you know a little about our son Jonathan. Jonathan was diagnosed mentally retarded before he was two years old and then diagnosed autistic at six years old. Jonathan’s life was difficult in many ways because of the afflictions he suffered, as well as not being able to speak and communicate properly. You can only imagine the frustration, if it were you. Lisa and I placed Jonathan in the Anderson School in Staatsburg , New York , in January of 2003, so he could learn and prosper more as well as be toilet trained. We were told that the school had 100% success with toilet training, and highly structured teaching in their school, and that the carry over in the residential settings was excellent. Jonathan was making some significant gains, but in the Fall of 2004, things took a horrible turn for the worse. We received a call from the Director of the school saying that our son was in a crisis. Afterward, we found out that the school was withholding meals on a daily basis from Jonathan for behavior modification, or “intense programming” in their own words, whenever Jonathan did not have his shirt or clothing on. Jonathan was struggling with a compulsive problem of keeping his shirt on, and this is how the school planned to program our son, without our knowledge or consent, or the knowledge or consent of a Human Rights Committee. This unbelievable abusive and neglectful plan was then carried out by numerous staff for over five weeks. Jonathan was also secluded for extended periods of time in his bedroom, at times naked lying in his own urine, missing many days of school, without our knowledge. During this time, Jonathan sustained dozens of bruises over much of his body, which was not reported properly by the school to both New York State agencies, OMRDD or CQC, as required for investigation. How can such things happen? How can people do such inhumane things? It is still hard for Lisa and I to understand how people can do such things. After a four week investigation was completed by OMRDD regarding these abuses of our son Jonathan, all of the records were then immediately sealed by the State of New York and none of the individuals involved were held accountable by law. The State of New York continued to withhold all of these records from us until the amendment to Jonathan’s Law was signed by Governor Spitzer on July 18, 2007. Now under Jonathan’s Law, parents and legal guardians are able to obtain valuable investigative records and incident reports regarding their children to help insure their safety. Under the amendment to Jonathan’s Law, parents and legal guardians can obtain investigative records and incident reports dated from January of 2003 until the current date, by requesting their records in writing, by no later than December 31, 2007.
After removing Jonathan from the Anderson School , Jonathan struggled incredibly as a result of the abuse he went through. Jonathan was then diagnosed with Post Traumatic Stress Disorder as a result. After doing our best to care for Jonathan at home, without getting much assistance from OMRDD, despite pleading for help, we had to place Jonathan in another facility. We could not care for Jonathan alone. At this time Jonathan went into OD Heck, in Niskayuna , New York , which is a State run residential facility. A year and a half later, on February 16, 2007, while away on a trip, Lisa and I got the most horrible news any parent could ever get. “Last night Jonathan stopped breathing and he could not be revived”. Lisa and I both buckled to the sidewalk under the grief of the news coming over the payphone. We were in St. Thomas trying to get some respite from life’s difficulties, to get the worst news imaginable. We later received, a call saying that two men have been arrested and charged for improperly restraining Jonathan to death. Lisa and I were a couple of thousand miles away, and our precious first born son Jonathan was killed, we are told. If it were not for our faith in Jesus, there is no way we could have survived it all. By His amazing grace, as well as the amazing outpouring of love through so many people, we are doing OK. Hurting, yes, but we know there are many things we must do. We are compelled to help prevent this from happening to other children or their families. This is why Lisa and I have established the Jonathan Carey Foundation in Jonathan’s name, to do everything possible to stop such injustices, and help vulnerable children.
Most vulnerable children cannot speak or defend themselves and desperately need our help, meaning each and every one of us, in whatever way we can. Lisa and I have gained much insight through all that we have gone through, and have a responsibility to use that insight and knowledge to help bring about necessary changes and fight for what is right. Our hope and our prayer is that these changes will affect the lives of thousands of precious children and their families. We must continue to raise awareness of the issues facing those living in residential care facilities and schools, and their families.
We are also compelled to raise awareness and to encourage people to get involved in rescuing orphaned and abandoned children. We have been involved with a ministry called Hearts of the Father Outreach for many years now. I have seen first hand several young children, without parents, poor and destitute, sleeping on sidewalks in plastic corn meal sacks in need of a home, love, and their basic needs met, such as regular meals, clothing, and medical attention. These children can be rescued and literally saved for very little cost, if people first care, and second have an avenue to help. Our desire is to help point the way to other existing organizations and ministries that are doing such wonderful work. The Jonathan Carey Foundation is all about helping vulnerable children in any way possible, but it is going to take a team effort. There are millions of vulnerable children, in all sorts of dire need. Will you help? If everyone helps in whatever way they can, a tremendous number of precious children’s lives will be turned around, and I believe forever.
We are closing our family business named Solo Auto Sales, located at 90 Delaware Avenue in Delmar , New York , and are converting the use of the property into the office for The Jonathan Carey Foundation. We are now currently able to accept charitable contributions, which are tax deductible. We are going to need your help, as well as the help of our entire community, to accomplish and bring about the necessary changes needed to insure the safety and wellbeing of vulnerable children. Thank you for caring, and thank you for considering supporting The Jonathan Carey Foundation. If you would like to help financially, please click on the donate tab for the information necessary. Thank you.
Michael Carey
