A man with Huntington's Disease is at the heart of this case. More info: "Huntington's Disease The Granddaddy of Them All" by Louise Wilkinson. According to the Americans w/Disabilities Act, the law must make reasonable accommodations, here it refused to do so which resulted in his death!
2-25-2008 Delaware
DOVER — A 22-year-old Huntington's disease victim
who was denied a bed in a state health care facility because he was a registered sex offender choked to death today at a Dover mental health clinic.
Family members said they were told that Joseph Heverin, 22, whose muscle control had deteriorated to the point where he often fell and had to be put in a wheelchair, choked to death on a sandwich at Dover Behavioral Health Systems.
"He was dead when he got to the hospital," said Heverin's brother, Paul Vrem.
Vrem said he learned of his brother's death after driving to Dover Behavioral to pick him up for a dental appointment.
"They told me that he had choked on a grilled cheese sandwich and that they were administering CPR," Vrem said.
William Weaver, chief operating officer of Dover Behavioral Health Systems, and other clinic officials did not immediately return telephone messages seeking comment.
Colin Faulkner, director of public safety for Kent County, said paramedics were dispatched to Dover Behavioral Health shortly before 12:30 p.m. in response to a report of a person choking.
"It would appear that he went into cardiac arrest, full arrest, as the result of an unresolved choking incident," Faulkner said.
Jay Lynch, a spokesman for the state Department of Health and Social Services, confirmed Heverin's death.
Heverin's mother, Dianne Vrem, said Dover Behavioral officials kept family members in a waiting room until Heverin had been taken away by ambulance, and that Kent General officials also refused her request to be with her son.
"I just wanted to hold him and let him know that his mom was there," she said.
A spokeswoman for Kent General did not immediately return a telephone message this afternoon.
Last week, Heverin was the subject of an Associated Press article describing the bureaucratic limbo in which his criminal past and his disease — an incurable, degenerative neurological disorder that also killed his father and other family members — had left him.
Officials at Dover Behavioral, a short-stay psychiatric facility where Heverin had been admitted last summer for treatment of depression, had sought and received court permission to discharge him, arguing that he is not mentally ill. He remained at the facility as his guardianship case worked its way through the court system.
Even though a court declared Heverin "a disabled person" who was "unable to act in his own best interest," health and social service officials refused to place him in state-run long-term care facility. They argued that he was neither developmentally disabled nor mentally ill.
The primary reason for their opposition, however, was that Heverin was a registered sex offender. He had twice been convicted of unlawful sexual contact, incidents that his supporters believe stemmed from the effects of Huntington's disease, a hereditary disorder that has been linked with inappropriate sexual behavior.
Dover Behavioral officials said they had tried repeatedly for more than a year to find placement options for Heverin, but no facility was willing to take him.
Kristopher Starr, an attorney appointed as a fact-finder in Heverin's guardianship case, submitted a report earlier this month excoriating state officials for refusing to place Heverin in a skilled nursing facility, at least not until he is "bedridden."
"They finally got what they wanted; they won't have to deal with the problem anymore," Paul Vrem said Monday.
..more.. by RANDALL CHASE, Associated Press
Ailing sex offender in bureaucratic dilemma
2-19-2008 Delaware
DOVER -- The Huntington's disease that killed his grandmother, his father and several other members of his family is now slowly eating away at Joseph Heverin's life.
Heverin, 22, gets around at Dover Behavioral Health System, where he was admitted last summer for treatment for depression, in a wheelchair. His movements, according to a court-appointed observer, are "spastic, and at most times, uncoordinated."
"Joe falls frequently -- our X-ray company knows him by name," DBHS Chief Operating Officer William Weaver wrote last month to Heverin's public guardian.
Dover Behavioral, a short-stay psychiatric facility, has sought and received court permission to discharge Heverin, arguing that he is not mentally ill.
If discharged, however, Heverin could wind up on the streets.
Even though a court has declared Heverin "a disabled person" who is "unable to act in his own best interest,"
health and social service officials are unwilling to place him in a state-run long-term care facility. They contend that he is neither developmentally disabled nor mentally ill.
The overriding problem, however, is that Heverin is a registered sex offender.
He has twice been convicted of unlawful sexual contact, incidents that his supporters believe stem from the effects of Huntington's disease, which has been linked with inappropriate sexual behavior.
"An individual who is a registered sex offender, who is mobile, presents significant issues," said Department of Health and Social Services Secretary Vincent Meconi.
DHSS officials say they have tried repeatedly for more than a year to find placement options for Heverin, but that no facility is willing to take him, even though there is no law prohibiting public or private health facilities from accepting sex offenders for treatment.
"There's no law that prevents us from taking him, and there's no law that compels us to take him," said state Public Health Director Dr. Jaime Rivera.
Heverin's mother, Dianne Vrem, has sought help from state lawmakers, to no avail.
"He's at the point now where he needs a structured environment," said Vrem, who was appointed co-guardian of her son last year but said she is no longer able to meet his needs at home.
Home, at one point, was a recreational vehicle parked in Vrem's yard, in which Heverin lived for a year until Kent County officials ordered it removed.
Appeals to the state Department of Justice to have Heverin's name removed from the sex offender registry, in the hope of ending what one attorney described as "an unfortunate medical stalemate," also have gone nowhere.
"From what I have seen, most people who are on the sex offender registry suffer negative consequences as a result of being on it," state prosecutor Richard Andrews wrote last year in a response to a legislative plea for help. "He is unfortunately a recidivist offender."
State law allows for offenders to be reclassified or removed from the registry under certain conditions, including the passage of at least 10 years since sentencing. But the Justice Department said the law does not allow for Heverin to be removed from the registry.
Even if Heverin were somehow removed from the registry, he still likely would be barred from the Delaware Hospital for the Chronically Ill, which has treated Huntington's patients in the past.
Rivera said DHCI would deny admission to a person deemed to be a danger to himself or others.
"The thing that is most problematic to us is that he's a mobile, convicted sex offender," Rivera said. "If he can get around, if he can move himself around in a wheelchair, I think we would consider him mobile."
Kristopher Starr, an attorney appointed as a fact-finder in Heverin's guardianship case, excoriated DHSS and Rivera for refusing to place Heverin in a skilled nursing facility, at least not until he is "bedridden."
"Such a position from a state physician, a per se government actor, is disquieting," Starr wrote in a letter to the Court of Chancery.
A University of Maryland doctor who has worked with Heverin contested Rivera's statement that Heverin is a threat.
"I ... do not feel that he is at risk for re-offending with inappropriate sexual behavior," wrote Dr. Karen Anderson, a professor of psychiatry and neurology and director of the University of Maryland's Huntington's Disease Clinic.
Anderson concluded that, in addition to moderate to severe Huntington's, Heverin suffered from dementia and major depression, which was in partial remission but included anxiety about his placement issues.
Robert M. Stein, a psychologist and founder of the Center for Neurobehavioral Health in Lancaster, Pa., said the behavioral problems associated with Huntington's disease usually manifest themselves before the physical problems. "He's probably going to die within about 10 years," Stein said. "He's on a steadily downward course."
..more.. by RANDALL CHASE, Associated Press
