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------------------------------------- VOR Weekly E-Mail Update July 13, 2007 -------------------------------------- ======================================================== Contents
1. Help secure co-sponsors for H.R. 2839!
2. Editorial: Federal P&A “advocates” are standing in the way of reform.
3. Either agree or stay home: A DD Council, tax-funded summit on disabilities and “inclusion” excludes dissenters ======================================================== ---------------------------------------------------------- 1. Help secure co-sponsors for H.R. 2839! ---------------------------------------------------------- Have you responded to VOR's Action Alert to help secure co-sponsors for H.R. 2839: http://vor.net/HR2839ALERT607.htm? The time is now. The opposition is working hard to defeat H.R. 2839; we MUST match their efforts.
The bill is based in common-sense, family-first principles. This bill, if passed, will require that guardians, often family members of people with developmental disabilities, make fundamental decisions regarding their loved ones' care, not paid attorneys.
WE NEED TO SHOW CONGRESS THAT THERE IS STRONG SUPPORT FOR H.R. 2839. WE NEED TO SECURE CO-SPONSORS.
Your letters are needed!! Contact your Representative today and urge that he/she co-sponsor H.R. 2839.
--------------------------------------------------------------------------------------------- 2. Editorial: Federal P&A “advocates” are standing in the way of reform --------------------------------------------------------------------------------------------- Summary: The following editorial by Sally Satel, a psychiatrist and resident scholar at the American Enterprise Institute, raises additional concerns about Protection and Advocacy in the mental health context. As with MR/DD services, P&A seems driven, at all costs, by ideology, rather than rationale treatment and care.
By Sally Satel http://weeklystandard.com/Content/Public/Articles/000/000/013/679vkrbg.asp
It often takes a tragedy to inject some sanity into mental health law. The death of Kendra Webdale is an unforgettable example. In January 1999, Webdale was pushed in front of a New York City subway train by a man with schizophrenia. In her memory, the state legislature quickly passed Kendra's Law to enable courts to compel psychotic individuals with a track record of violence to take their medication.
The Virginia Tech massacre last month will surely prompt changes in commitment laws too. Virginia governor Timothy M. Kaine has created a panel to review events and issue recommendations. The governor's panel will join several other Virginia bodies already reviewing the state's mental health laws.
The most prominent is the Task Force on Civil Commitment. It was established six months ago by the chief justice of the Virginia Supreme Court to scrutinize the state's unusually narrow standard for committing someone to a psychiatric facility against their wishes. (A patient must be "imminently" dangerous--in short, clearly ready to kill himself or someone else--before a judge can mandate treatment.)
The task force proceedings are bitterly contentious. On one side are civil liberties lawyers and disgruntled patients who insist that lowering the "imminent" danger threshold would threaten individual rights. On the other side are psychiatrists caring for people with schizophrenia and bipolar illness and their relatives who have lived through the nightmare of not being able to get timely treatment for desperately ill loved ones.
Contests like this have played out in almost every state at one time or another. But determining the proper scope of involuntary care of the severely mentally ill is not exclusively a state matter. The federal government plays a surprisingly influential role in shaping treatment laws--and in undermining their reform. In fact, a lot of the financial and ideological firepower obstructing common sense reforms comes from the nation's lead agency on mental health, the Substance Abuse and Mental Health Services Administration (SAMHSA), which is part of the Department of Health and Human Services.
Consider a program called Protection and Advocacy for Individuals with Mental Illness (P&A). Established in 1986, the P&A program began with a laudable mission--to investigate allegations of patient abuse, neglect, and rights violations on hospital wards or in residential facilities. The announcement last month of a federal probe into overcrowding and maltreatment at Georgia's state mental hospitals shows this shameful problem is very much alive.
However, the program mission soon began tilting away from protection of institutionalized patients toward an autonomy-at-any-cost version of advocacy. As Rael Jean Isaac and Virginia Armat documented in their 1990 book Madness in the Streets, the P&A quickly devolved into a "playground for anti-psychiatric activists."
The P&A program operates as 50 state agencies working with $34 million a year from SAMHSA, or about one-tenth of the agency's discretionary mental health budget.
Some examples of P&A activities include:
For its part, SAMHSA is silent on the subject of court-ordered outpatient commitment. The agency promotes a treatment philosophy called the "recovery model," which holds that with sufficient therapy, housing options, and employment programs, patients with schizophrenia or manic-depressive illness will be able to take charge of their lives.
To be sure, a lot of patients will, but the recovery model is a dangerous one-size-fits-all fantasy that ignores the toughest cases, like the men who killed Kendra Webdale and Laura Wilcox. Granted, such severely disturbed people are a small minority of all individuals with mental illness. Nonetheless, they often require heavy doses of paternalism. Studies suggest that roughly half of all patients with psychosis are not fully aware of their illness. The medical term for this phenomenon is anosognosia. It is similar to neglect syndromes in stroke patients who don't acknowledge paralysis of a limb because the regions of the brain required for awareness of the problem are severely compromised. Mercifully, this is reversible to varying degrees with medication, but because patients don't acknowledge illness, they may refuse medication, which, in turn, increases the risk of violence.
And that risk is real.
To be certain, most people with schizophrenia pose no danger, but those who are paranoid, delusional, and hear voices are indeed more likely to be violent compared with their more socially withdrawn and apathetic counterparts. Use of drugs or alcohol increases the risk further. The 2006 National Institute of Mental Health Clinical Antipsychotic Trials of Intervention Effectiveness study, which surveyed patients over a six-month period, found that psychotic individuals committed acts of "serious violence" (e.g., assault or threat with a lethal weapon, assault with injury, or a sexual assault) at three to nine times the rate of patients whose florid psychotic symptoms were under control. The latter subgroup, data from other studies suggest, are no more likely than the general population to commit serious violence. Thus, actively psychotic people are at least three to nine times as likely to be dangerous as the rest of us. Thankfully, despite this elevated risk, only a small minority of people within that subgroup, a little more than 5 percent, actually perpetrated serious violence.
Outpatient commitment can help enormously. In 2005, the New York State Office of Mental Health released an assessment of the first five years of Kendra's Law. Patients participating in the program for at least six months had a marked improvement in a wide range of measurements, including frequency of arrests, hospitalizations, assaults, threats of violence, incarceration, and homelessness. More than twice as many patients took their medication when under court order as before. A raft of studies from states such as North Carolina, Arizona, Iowa, and Ohio, and the District of Columbia have demonstrated similar benefits.
An appalling case of federally funded patient "advocacy" run amok was exposed just this month. On May 3, Robert Bruce of Caratunk, Maine, testified before the state legislature about his 25-year-old son, William. The young man had been a patient at Riverview Psychiatric Center from February to April 2006, where he had been committed after assaulting his father. Mr. Bruce and his wife were afraid of their son and begged the hospital to medicate him with the antipsychotic that had previously quelled his paranoia and aggression.
But William wanted to leave the hospital. Advocates from the Disability Rights Center, Maine's federally funded P&A, pushed for his release despite dire warnings from psychiatrists ("I find myself extremely concerned about this young man's potential for violence," reads one of many explicit notes in the medical record).
Nonetheless, the advocates insisted that William was "competent" for discharge and openly coached him--as a lawyer would his client--on how to placate the doctors so they'd let him go. William prevailed, and Riverview discharged him on April 20. Exactly two months later he murdered his mother with a hatchet. In his wrenching testimony before Maine legislators, Robert Bruce emphasized "the role that the patient advocates played in this tragedy."
In the wake of the Virginia Tech shooting, there has been murmuring on Capitol Hill of forthcoming proposals to better equip state mental health systems to manage the severely mentally ill. President Bush has already appointed HHS secretary Mike Leavitt and Education secretary Margaret Spellings to conduct an inquiry on what went wrong.
Unless SAMHSA miraculously reforms itself quickly (and Congress could help things along by prohibiting P&A's from lobbying state legislatures on mental health laws), a much less overbearing federal role might be the best thing to hope for from this process. It is disgraceful that, to date, the lead federal agency on mental health care has not been able to grasp the complexity of severe mental illness and has failed to keep its watchdog component from harming the vulnerable souls it is entrusted to protect.
------------------------------------------------------------------------------------------------------------------------------------------------- 3. Either agree or stay home: A DD Council, tax-funded summit on disabilities and “inclusion” excludes dissenters ------------------------------------------------------------------------------------------------------------------------------------------------- Either agree or stay home A tax-funded summit on disabilities and "inclusion" excludes dissenters.
By STEVE BOUSQUET June 19, 2007
TALLAHASSEE - A taxpayer-funded, invitation-only conference on caring for people with developmental disabilities opened amid controversy Monday at an elegant Orlando hotel.
The event has reopened old wounds between two groups with fiercely held opposing views: those who consider institutions a suitable setting for people with disabilities, and those who consider that "segregation."
"Because it is so contentious, and we represent and serve all people, it was recommended that I not attend, " said Jane Johnson, director of the Agency for Persons with Disabilities. "It's not right for the agency to come down on one side or the other. We serve people in all settings."
Johnson said her absence was prompted in part by e-mails sent to Gov. Charlie Crist and other state officials, criticizing the summit, which began with a reception and dinner Monday at the Peabody Hotel in Orlando.
The three-day "Inclusion Now! Summit" is being hosted by the Florida Developmental Disabilities Council, which draws most of its budget from federal funds.
The goal, an organizer said, is to encourage people with disabilities to become more integrated in society, rather than living in group homes or institutions.
"What we want to do is create more choices, " said organizer Nila Benito of Lutz, the council's treasurer and mother of two autistic sons, who works on issues for the University of South Florida.
People with disabilities, she said, "are the last minority that it appears okay to segregate."
About 80 people are attending the all-expense-paid summit. Benito confirmed that only people who support the choice concept were invited.
"The first criteria was people who were change agents, who already have a belief in inclusion," Benito said.
But what Benito calls choice, some families worry is a campaign to close down group homes and institutions.
"This is an abuse, and it's not right, " said Don Stover of New Port Richey, who e-mailed his complaints to state officials.
Stover said his son has lived for 40 years at a state-run mental institution in Fort Myers.
"Our son has had a good life, and they're giving him the best of care, " said Stover, who called Benito "a very stubborn old lady."
Stover and others have written to Crist and legislators, asking why the council can use public funds to exclude people from a conference devoted to the theme of "inclusion."
Benito said anyone can attend events where public comment will be taken, but not at the working-group seminars. She added she would meet personally with anyone critical of the conference.
The summit comes at a time when families of the developmentally disabled are reeling from steep state cuts in services, implemented by the Legislature to close an agency budget deficit.
The disabilities council's project budget summary shows a payment of $126, 000 for the "inclusion summit research and facilitation, " to be paid to Syracuse University, another $133, 000 for a "grass roots campaign" and a $19, 000 fee to an "inclusion summit planner."
Debra Dowds, the council's executive director, said the group got discounts for $129-a-night rooms and free meeting rooms, but added: "The cost of the food is exorbitant."
Dowds said that under federal law, the council must work to build "inclusive communities."
"We want people to be in the community. We want them living in their own home, " Dowds said. "And we're going to invite people who believe in that." ------------------------------------------------------------------------------------------------- Tamie Hopp
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