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FOR IMMEDIATE RELEASE

ILC receives $250,000 to build regional disability training, Technology and conference center.

View the Press release

 

Tickets are now available for our Fundraising Concert with Jamie Kay

View our flyer

 

People 1st

Independent Living Inc.'s

Quarterly Newsletter

Is now available

HERE

You can also see Archived copies of our newsletter Here.

 

 

The Orange County Mental Health and Wellness Conference was held on June 25th. Read about it here.

 

 

Independent Living held the The third annual Early Childhood Conference on June 11th

Read About it Here

 

 

US House of representatives pass improvements to the 1990 Americans with Disabilities Act.

Read the full article here.

 

 

Valueless Lives of Elderly and Disabled in Nursing Homes

News Story

 


See
Donna's Story continuation from our newsletter

A blind Governer adjusts and so does Albany. An article from The New York Times.

Boot the SHU is passed into law.

Final Welfare Reform Regulations Announced

Rules will promote self-sufficiency and program flexibility

 

HAVA voting Law

Signs of a

Sea Change In Voting

 

2008
 DISABILITY
Legislative
Action Agenda!!
 
Keeping Patients From Reentering the Hospital Article from the Wall Street Journal
 
Title III of the ADA Becomes NY State Law
 
NEW YORK TO BRING NEWS SERVICE TO VISUALLY IMPAIRED CONSUMERS
 
Public Input Needed- Partnership4coverage
 
Rights for The Disabled!
Governor Spitzer Signs Legislation Increasing Rights for The Disabled
 
Burden of Proof!
Governor Spitzer signs law that puts burden of proof on schools in special education disputes!! Will make it easier for parents of disabled children to challenge school districts' decisions regarding their child's education
 
Shadows Training
An informational program for students with disabilities, their families and professionals.    May 28
            7:00 pm                Orange/Ulster BOCES Conference Room A

 

 

BE PARKING CONSIDERATE

View a sample "fake"

Reserved Parking ticket

"Be Parking Considerate!"

   

NYS DMV Reserved Parking Permit Application

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MISCELLANEOUS
 

Browsealoud
is available for people who find it difficult to read online. Reading large amounts of text on screen can be difficult for those with literacy and visual impairments

.

IN THE NEWS:

 

Final Welfare Reform Regulations Announced

Rules will promote self-sufficiency and program flexibility

 

New regulations to strengthen welfare reform were published today in the

Federal Register. The changes to the Temporary Assistance for Needy Families

(TANF) program will help move individuals off of the welfare rolls and into

the workplace by giving states the flexibility to design their own effective

welfare-to-work initiatives.

 

"Welfare reform has played a key part in finding work opportunities for

needy Americans," said HHS' Acting Assistant Secretary for Children and

Families Daniel Schneider. "These regulations will help states tailor their

welfare programs to better serve those making the move from welfare to

work."

 

The new regulations give states leeway to help families remove barriers to

employment by converting the current six-week limit on counting job search

and job readiness activities to an hourly equivalent.  They also permit

states to count participation in baccalaureate or advanced degree programs

in vocational educational training, up to the 12-month lifetime limit.  In

addition, they hold states responsible for documenting all hours they report

each month for work participation, while clarifying that daily supervision

of participants does not have to involve in-person contact each day.

 

"The Bush Administration is committed to helping families reach

self-sufficiency," said Sidonie Squier, director of HHS' Office of Family

Assistance. "These new regulations will modernize welfare reform so these

programs resemble a real work environment, helping participants with their

transition into the work-force."

 

Since welfare reform became law in 1996, welfare rolls for families have

declined by 62 percent, with the most recent caseload numbers showing

1,672,355 families currently on the TANF rolls. The regulations announced

today follow up on an interim rule announced in June 2006 after TANF was

reauthorized.

 

To view the complete final rule, log on to

http://a257.g.akamaitech.net/7/257/2422/01jan20081800/edocket.access.gpo.gov/2008/08-455.htm

Title III of the Americans with Disabilities Act becomes New York State Law

Imagine these scenarios:  A local hospital does not provide a qualified sign language interpreter for a deaf parent when her child is hospitalized for an emergency.  A local department store places items on racks in aisles too narrow for a wheelchair user to get to.  A local restaurant has no accessible entrance.  A movie theatre entrance is accessible, but the bathrooms are not. What protections do members of the public have?

The Americans with Disabilities Act (ADA) is a federal law that was passed in 1990 and one of the primary areas of the ADA is referred to as Title III, which prohibits discrimination on the basis of disability including the inaccessibility of public places. Public places are private businesses in New York that offer their services to the general public and under the ADA they are required to be fully accessible. However, because this is federal law, New York State does not have to recognize or enforce this legislation. The disability community realized that we needed a state version of Title III in order to gain local enforcement of this public accommodations law.

After two short years of aggressive advocacy by disability rights activists and concerned citizens, on August 1, 2007 Governor Spitzer signed into law “An act to amend the executive law, in relation to protections against discrimination on the basis of disability in the area of public accommodations”. 

As of January 1, 2008, private businesses that offer services to the public will now have to remove barriers of inaccessibility to their facilities, programs and services, and take action to assure that people with disabilities have an equal opportunity to participate in certain programs, services and activities.

Specifically, this law adds three new paragraphs (c), (d), and (e) to subdivision 2 of section 296 of the Executive law. Paragraph (c) adds to the definition of "discriminatory practices" to include refusal to make reasonable modifications to policies, practices or procedures, refusal to take steps that would ensure that an individual with a disability is not excluded or denied services due to the lack of auxiliary aids and services and refusal to remove architectural and communication barriers that are structural in nature.  Paragraph (d) adds that changes must be “readily achievable”  in costs and resources, “auxiliary aids and services” includes qualified interpreters and qualified readers, and “undue burden” means “significant difficulty” to comply. Paragraph (e) exempts air carriers.

The new law will also allow persons with disabilities the ability to file certain complaints related to discriminatory practices through the State Division of Human Rights rather than pursuing costly litigation in court.  Individuals can bring their complaints at one of the numerous DHR centers around the State.  If the Division finds probable cause of a violation, a lawyer will present the complainant’s case.  In addition, the Division itself can bring affirmative investigations and initiate complaints

Susan Stockburger, Systems Advocate
Independent Living, Inc.
Women’s Bar Association of Orange & Sullivan Counties
 
 

NEW YORK TO BRING NEWS SERVICE TO VISUALLY IMPAIRED CONSUMERS

FOR IMMEDIATE RELEASE:

October 2, 2007

Lieutenant Governor David A. Paterson and New York State Consumer Protection Board (CPB) Chairperson and Executive Director Mindy Bockstein announced today that the CPB is the first State Agency to work together with the National Federation of the Blind (NFB) of New York State to provide consumer alerts, notices and newsletters to individuals who are blind or visually impaired via the NFB's NEWSLINE(r) service.

NFB-NEWSLINE(r) enables adults and children who are blind or print-impaired to read newspapers, magazines, notices of public interest, government announcements and other materials of interest at any time and from anywhere. Text-to-speech technology developed by the National Federation of the Blind, has changed the way people with visual impairments can access reading material. The only technology required is a standard touch-tone telephone.

"I am pleased that the Consumer Protection Board has taken the initiative to make the critical information that they produce available to the blind and visually impaired," Lieutenant Governor Paterson said.

"Our goal is for this groundbreaking program to lead to even greater access to government for blind and print-impaired individuals."

Mindy Bockstein, Chairperson and Executive Director of the CPB said: "This revolutionary technology is opening doors and providing reading materials to adults and children who could never before access them. The CPB is dedicated to protecting all New Yorkers. This population will now be able to have the information they need about important issues like identity and credit card theft, recalls, consumer credit issues and more. With this technology, visually impaired New Yorkers can do something as simple as access the newspaper or work independently on school projects. We are grateful to the NFP for providing this critical service."

Through the use of the telephone, a subscriber to NFBNEWSLINE(r) can access more than 250 daily newspapers, including the Albany Times Union, the Buffalo News, the Long Island Newsday and the New York Times, a growing number of magazines and now for the first time, timely and important notices from government agencies.

Carl Jacobsen, President of the National Federation of the Blind of New York State, said: "I am pleased that the Spitzer/Paterson Administration has reached out to the blind community to partner in this venture. For the first time, we can get the same notices as our neighbors and not have to wait for second-hand information. I applaud the Administration, especially the CPB, for yet another effort to make government more accessible and participatory by all of its citizens."

The NFB-NEWSLINE(r) service is totally free to anyone who is unable to access standard print. The estimate is that there are more than 310,000 persons in New York State who would be eligible for this free service. This includes people who have not been diagnosed as legally blind, but who have difficulty reading printed information. The NFB-NEWSLINE(r) system is simple and user friendly and there are tutorials and training available.

Persons interested in obtaining this service for their own use or for a family member should contact the National Federation of the Blind of New York State at 718-567-7821 or by e-mail at Newsline@nfbny.org, or access the CPB website at www.nysconsumer.gov for information.

CONTACT: Maritere Arce

 Maritere.arce@chamber.state.ny.us

EXECUTIVE OFFICE OF THE NEW YORK STATE LIEUTENANT GOVERNOR

212.681.4640 / 518.894.3003

 

Public Input Needed!!! Partnership4Coverage

At the direction of Governor Spitzer, the NYS Departments of Health and Insurance will conduct a series of public hearings to solicit input on the development of proposals for achieving health system reform, increasing access to health insurance coverage, and moving toward universal healthcare coverage in New York. We encourage ILCs to participate in these hearings. For more information, including the hearing schedule, please visit: http://www.partnership4coverage.ny.gov/hearings/notice.htm.

 

Governor Spitzer Signs Legislation Increasing Rights for The Disabled

8/24/07 Governor Eliot Spitzer today announced that he has signed legislation significantly expanding the avenues for people with disabilities to assert their rights.  The new law will make it far easier for disabled New Yorkers to seek relief when public facilities fail to reasonably accommodate their disability.

“It is critical that the state provide individuals with disabilities full and equal opportunities,” said Governor Spitzer. “This law takes a significant step towards a New York that removes barriers to the full enjoyment of the rights of all of its citizens.”

Specifically, the new statute would make it a discriminatory practice under New York law for places of public accommodation to:

  • Refuse to make reasonable modifications in policies, practices, or procedures necessary to afford facilities, privileges, advantages or accommodations to individuals with disabilities, unless making such modifications would fundamentally alter the nature of the facilities, privileges, advantages or accommodations;

  • Refuse to take steps necessary to ensure that no individual with a disability is excluded or denied services because of the absence of auxiliary aids and services, unless taking such steps would fundamentally alter the nature of the facility or would result in an undue burden; or

  • Refuse to remove structural architectural or communication barriers in existing facilities, and transportation barriers in existing vehicles and rail passenger cars, where removal is readily achievable.

These principles bring New York State law in alignment with the federal Americans with Disabilities Act, and thus will not present businesses or government agencies with a new or unfamiliar set of rules to follow.  

The new law will allow persons with disabilities the ability to file certain complaints related to discriminatory practices through the State Division of Human Rights rather than pursuing costly litigation in federal court.  Individuals can bring their complaints at one of the numerous DHR centers around the State.  If the Division finds probable cause of a violation, a lawyer will present the complainant’s case.  In addition, the Division itself can bring affirmative investigations and initiate complaints.

Senator Steve Saland, Senate sponsor of the legislation, said: "New York State has led the nation for many years in ensuring that accommodations are made for people with disabilities. It is vitally important for the State to continue this commitment to assure adequate protection against discrimination on the basis of disability.  By putting the federal requirements in state law, we are greatly enhancing the availability of state enforcement mechanisms through the Human Rights Law.”

Assemblywoman Amy Paulin, Assembly sponsor of the legislation and former Chair of the Assembly Task Force on People with Disabilities, said: "I am absolutely thrilled, after at least ten years of intense advocacy from New York's disability community, that Governor Spitzer has signed this measure into law. People with disabilities need to be assured that their civil rights are well protected in this state.  This measure will go a long way toward both preventing and, hopefully eliminating, discrimination against people with disabilities when they choose to utilize areas of public accommodations in New York, regardless of what happens to the ADA on the federal level.   I look forward to working with the Governor to ensure that all existing protections offered under the ADA are put into state law as well."

Sim Goldman of Disability Advocates said: “We are pleased that New York has clarified and strengthened the legal rights of New Yorkers with disabilities under State law.  We thank the Assembly, the Senate and the Governor for their collective efforts in enacting this law, as well as our fellow advocates who have worked tirelessly for years to achieve this goal."

Frank Pennisi, the Chair of the ADA Committee of New York State, said:  “With the enactment of this law, Governor Spitzer has shown his commitment to true equality for all New Yorkers.  This bill will make it possible for individuals to assert their right to access to public facilities, and to make those rights guaranteed them by law a reality.”        

The legislation will go into effect in January 1, 2008.

 

 

 

Law puts burden of proof on schools in special education disputes

 

Associated Press
Last updated: 4:24 p.m., Thursday, August 16, 2007

ALBANY -- A new law will make it easier for parents of disabled children to challenge school districts' decisions regarding their child's education, Gov. Eliot Spitzer's office announced Thursday.

The law signed this week makes the school district responsible for proving it is satisfying legal obligations to provide an appropriate individualized education program for a student with a disability, according to Spitzer's office.

For more than 30 years in New York, school districts that were challenged had to prove in an administrative hearing that a student's program was appropriate, said Spitzer spokesman Jeffrey Gordon. However, a 2005 U.S. Supreme Court ruling put the burden on the party requesting an administrative ruling, usually parents, for all states that didn't have a specific law or regulation on the issue --including New York.

"This bill rightly places the burden of proof on school districts that have the expertise needed to assess options and the responsibilities for implementing individual educational plans," said Spitzer in a release.

Under the federal Individuals with Disabilities Education Act, every disabled child is entitled to a "free appropriate public education," and school districts are required to develop a plan to meet the specific needs of each disabled student. The IDEA is meant to protect children's rights by giving school districts and parents the right to an administrative hearing if they can't agree on which services the child needs.

The law, which goes into effect in two months, will also strike a balance between a parent's desire for private placements and a school district's obligation to pay for out-of-district services, said Gordon. In the case of a parent seeking a private program for their child, they would have to prove it was more appropriate than the school district's individualized program.

Copyright 2007 Associated Press. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.

 

 

 

 

 

April 21, 2007

DOUGLAS J. HOVEY, Executive Director of Independent Living, Inc. honored at Safe Harbors of the Hudson's 1st Annual Inaugural Gala Ball- April 21st, 2007

 

A wonderful gala celebration occurred on  Saturday, April 21, in the beautifully restored "Green Room," as it was known for many years as part of the Hotel Newburgh. A benefit raising funds for Safe Harbors, the gala honored several "Cornerstone of the Community" individuals who have contributed to improving the civic life of Newburgh.

"Cornerstone of the Community" awardees:
  • Senator William J. Larkin, Jr.
  • Mr. Doug Hovey, Executive Director, Independent Living Inc.
  • Ms. Deirdre Glenn, Executive Director, Habitat for Humanity of Greater Newburgh

About Safe Harbors of the Hudson

Founded in 2000 in Newburgh, New York, Safe Harbors of the Hudson is a nonprofit organization with an independent board and a dedicated staff. As its first major project, Safe Harbors completed the restoration of the former Hotel Newburgh, transforming it into the Cornerstone Residence, which provides supportive housing units and artist lofts for qualified residents, who have access to various social services on-site. Dedicated in December 2006, the building offers facilities for residents as well as public facilities, including commercial storefront space available for lease. Safe Harbors is indebted to several key partners for the project's success; the work has been reported in numerous articles in the press. Safe Harbors is now engaged in planning the restoration of the adjoining historic Ritz Theatre.

 

Information provided Via SHOH website dated April 24, 2007. Pictures are property of IL staff.

 

 

 

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CDC Finds Increase in Teen Suicide; NYU Child Study Center Responds -- Identifies Warning Signs and Provides Tips for Parents

New CDC Report Shows Increase in Suicide Rates in Children Under 19 Years of Age from 2003 to 2004

NEW YORK, Feb. 5 /PRNewswire-USNewswire/ -- The New York University Child Study Center has identified warning signs of depression in teenagers for parents and tips for helping teens who may be depressed, in light of a new report from the Centers for Disease Control and Prevention (CDC). The CDC study, published in the February 2007 issue of Pediatrics finds that suicide rates in children under 19 years of age increased between 2003 and 2004. Suicide was the only statistically significant increase in child death over this time. Overall, the suicide rate increased by 18.2 percent from 2003 to 2004, an increase largely driven by older teens.

"A teen's statement of a wish to kill him/herself must be taken seriously," said Lori Evans, Ph.D., Director of Psychology Training and the Project Coordinator of TASA (Treatment of Adolescent Suicide Attempters) at the NYU Child Study Center. "Before they actually commit or attempt suicide, teens often make direct statements about their intention to end their lives, or less direct statements about how they might as well be dead or that their friends and family would be better off without them."

"Discussing the problem does not encourage the teenager to go through with the plan," emphasizes Dr. Evans. "On the contrary, it will help him or her know that someone is willing to be a friend. It may save your adolescent's life."

Watch for symptoms of depression lasting longer than two weeks, which may include:
-- A change in eating and sleeping habits
-- A marked personality change, exhibiting angry actions or rebellious behavior or withdrawal from friends and regular activities
-- Involvement in drugs or alcohol or other risky behaviors such as reckless driving
-- An overreaction to a recent humiliating experience
-- Difficulty in concentrating and a decline in the quality of school work
-- Persistent boredom and/or lethargy
-- Unusual neglect of appearance
-- Complaints about physical symptoms such as headaches and fatigue
-- A pattern of giving away or throwing away possessions
-- Intolerance of praise or rewards
-- Preoccupation with death in writing songs or poems
-- An increase in comments such as "I can't take it anymore" or "nobody cares; I wish I was dead"

How to help
-- Take person's comments regarding self-hate, suicide, or death very seriously
-- Don't try to convince the person to not feel bad. Don't tell them to "snap out of it" or say "don't feel bad"
-- Keep in close contact with the person and their parent, teacher, or a good friend
-- Ask the child or teen what you could do that would be helpful to them
-- Don't promise to keep any information a secret
-- If symptoms persist or are dangerous and interfere with daily functioning, consult a mental health professional immediately

Dr. Lori Evans is the Coordinator of TASA (Treatment of Adolescent Suicide Attempters) and the Director of Psychology Training at the NYU Child Study Center. TASA is a multi-site study designed to develop and evaluate treatments for adolescent suicide attempters to prevent reattempts. Participants received state of the art treatment by senior clinicians. TASA research findings are forthcoming.

CONTACT: Kari Root, 212 263 2479, 646 354 3405 (cell) or kari.root@med.nyu.edu

In conjunction with the CDC study being released in the February 2007 issue of Pediatrics, Lori Evans, Ph.D., from the NYU Child Study Center is available to talk about warning signs of teenage depression and how to know if your teen is suicidal. She can be reached by pager directly at 917-317-0294. NYU Child Study Center -- Department of Child and Adolescent Psychiatry The NYU Child Study Center is dedicated to increasing the awareness of child mental health issues and improving the research necessary to advance the prevention, identification and treatment of mental illness in children and adolescents on a national scale. The Center offers expert psychiatric services for children and families with emphasis on early diagnosis and intervention. The Center's mission is to bridge the gap between science and practice, integrating the finest research with patient care and state-of-the-art training, utilizing the resources of the New York University School of Medicine. The NYU Child Study Center offers a variety of mental health services for children, adolescents, young adults and their families. Child and Family Associates is the clinical arm of the NYU Child Study Center and the point of entry for all clinical programs. Its goal is to bring together search-supported evaluations and treatments with an individualized and family-centered approach. The Child Study Center was founded in 1997 and established as the Department of Child and Adolescent Psychiatry within the NYU School of Medicine in 2006. http://www.AboutOurKids.org

SOURCE: NYU Child Study Center
 

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Speaker Silver needs to change his mind

Troy Record Editorial

By: The Star-Gazette of Elmira 11/24/06

 

For those who have lost track, this law is named after 12-year-old Timothy O'Clair, a Schenectady boy who committed suicide after his parents fought for years to get him adequate mental health care. The family's insurance coverage was limited, and the last-minute desperate attempt to get Timothy care by relinquishing custody to the state proved too late.

No family - no one - should find themselves in such a position.

But years of negative stereotypes about mental illness still cling to us, and insurance companies have been reluctant to alter that norm. If a person is diagnosed with a heart ailment rooted in a physical imperfection, treatment is generally undertaken and continues until full recovery or a long-term maintenance plan is set.

If someone is diagnosed with bipolar disorder, an ailment rooted in a physical imperfection in the brain, treatment is too often refused or limited, regardless of the health impact of that policy. Old notions that mental health issues are a defect in character, rather than a flaw in brain function, have long buried that health care disparity under a cloak of shame.

With its passage of Timothy's Law, the Senate tried to help change that. The law sets minimum outpatient and inpatient visit insurance standards for everyone. In addition to assisting small businesses in meeting any potential added costs, it broadens the scope of coverage large employers must provide to adults and at-risk children - including health issues such as major depression and panic disorders, illnesses long dismissed as an indulgence to the weak willed.

It is far from a perfect package. Too little is done to address addictive disorders such as alcoholism and substance abuse. An earlier Assembly-backed version of the bill included this coverage, but this version does not.

This Timothy's Law is an important first step, and the Assembly should return before year's end to add its approval. A spokesman for Sheldon Silver, D-Manhattan, said the speaker has no plans to call a special session. We urge the speaker to change his mind.

Without Assembly approval this year, the measure would die. Don't let that happen without a vote, Mr. Silver.

Breaking down this barrier is essential and long overdue.

 

 

Sex offender bill considered

Newsday                      November 28, 2006

By: The Associated Press

 

ALBANY - The State Legislature will return to Albany Dec. 13 to consider laws that would allow confining sex offenders in psychiatric facilities after they have finished serving prison sentences.

Negotiations will also heat up on other issues that could be enacted in the closing days of Gov. George Pataki's 12 years in office. Among them are:

Action on the closing of hospitals and health facilities statewide under a plan scheduled for release today. Without the legislature's objection, the plan could be effective Jan. 1.

A possible override of Pataki's veto of an early retirement plan for public workers.

Increasing the number of charter schools allowed in the state from the current cap of 100.

Pataki called the legislature back yesterday, less than a week after his executive order to confine dangerous sex offenders in psychiatric facilities was overturned by the state's highest court.

On Nov. 21, the Court of Appeals said the Pataki administration acted illegally when it ordered sex offenders held without hearings as psychiatric patients after their prison terms were up. Pataki ordered the convicts held because he was frustrated by the legislature's failure to enact a law preventing their return to communities where they might repeat their crimes.

Pataki has said "civil commitment" is needed because of the high rate of repeat attacks by some sex offenders.

 

 

Don't rush to legislate

Civil confinement of sex offenders is too contentious to act on hastily

Newsday Editorial                    November 28, 2006

 

The question of how to protect our communities from sex offenders is so complex, and the solutions so elusive, that the last thing that's needed now is a special session of the State Legislature to try to pass a bill that the two houses have futilely batted back and forth for many months.

The issue is civil confinement: sending the worst sex offenders to psychiatric facilities after they have completed criminal sentences for their crimes. Last year, after the state's lawmakers failed to agree on a civil confinement bill, Gov. George Pataki decided to confine sexually violent predators by ordering the commitments administratively. Last week, the Court of Appeals unanimously slapped down that approach.

Pataki responded by saying he'd call a special session to pass a bill. That's the wrong way to do it.

Clearly, Pataki wants to resolve the issue before he leaves office. His stated reason is all the work he has done, without getting the bill he wants through the Assembly. But there's an obvious subtext: He wants to be president, and presidential candidates always strive to appear tough on crime.

The governor-elect, Eliot Spitzer, also knows a lot about this issue. As attorney general, he has had to defend Pataki's approach in court - an effort the Court of Appeals has now rejected. But Spitzer does agree with Pataki on the need for a civil confinement bill. Better to leave this issue for Spitzer to handle after he takes office in January.

Everyone wants children protected from violent sex offenders. Pataki says the State Senate bill that he favors is similar to laws in other states that the U.S. Supreme Court has found acceptable. But civil confinement still means sending people to psychiatric facilities for treatment, even though many experts say that the personality disorder in those who prey on children can't be treated successfully.

At least in psychiatric centers, some argue, sex offenders can be monitored and studied for treatments that may help. Maybe. And perhaps, with carefully constructed judicial review, civil confinement can work fairly. But New York shouldn't pass a law hastily, in a special session, as one governor leaves office and a new one waits in the wings.

 

 

Keep Sex Predators Behind Bars

NY Daily News Editorial          November 24, 2006

 

Gov. Pataki is calling the Legislature into special session in an effort to win passage of a law allowing New York to keep proven sexual predators confined in mental hospitals long after they have finished their prison sentences. Lawmakers should happily return to Albany for the quick enactment of the strongest possible bill.

The soon-to-be ex-governor issued his summons after the Court of Appeals ruled that he could not institutionalize these dangerous felons under existing state laws - an action Pataki began taking only because the state Senate and Assembly couldn't agree on a so-called civil confinement bill. They must now remedy that failure.

The onus falls primarily on Assembly Democrats and their leader, Speaker Sheldon Silver of Manhattan. While Pataki and the Republican-led Senate have supported civil confinement measures for nine consecutive legislative sessions, the Assembly took no action on the issue until this year. Then it passed a bill that would have provided the alleged predators with greater procedural protections than those fashioned by the Senate. Then the two houses never finished conferencing on the issue, for which Silver blames the Senate.

Enough is enough. The net result was inaction on a vital matter of public safety.

Pataki's proposal follows a model that the U.S. Supreme Court has found constitutional and is being used by 16 states. It sets up a process for screening sexual offenders while they're still in prison, having psychiatrists determine which ones are most likely to attack again and - after a trial-like hearing - commit the most dangerous to secure treatment facilities until they're safe for release.

Silver says he supports civil confinement in principle. Gov.-elect Eliot Spitzer goes for the concept as well. There is no reason the Legislature and the present governor cannot come to terms on a muscular law by year's end. Pataki has already confined 112 predators using procedures invalidated by the court, which did a public service in not ordering the immediate release of the dozen who challenged their confinement. But it is only a matter of time before a court starts cutting predators loose, unless Albany finally acts responsibly.

 

 

N.Y. needs law on civil confinement

Utica Observer-Dispatch Editorial                   November 28, 2006

 

AT ISSUE: Court ruling on sex offenders reiterates need for law

 

The ruling by New York's top court regarding sex offenders illustrates the need for state lawmakers to address the matter of civil confinement — at last.

Our state should have a legal process that protects the public, particularly our children, from dangerous sex offenders and affords due process of law to the offenders.

Gov. George Pataki had used a state mental health law that allows people deemed a threat to society to be confined in secure psychiatric facilities to keep violent sex offenders likely to attack again off the streets. This latest court ruling says Pataki didn't have the authority to do that.

In a 7-0 decision, the Court of Appeals found that 12 sex offenders, who are still in custody, should have been granted a hearing to determine whether they were still dangerous before being transferred to psychiatric facilities. The ruling ordered hearings take place immediately.

No one wants to see dangerous sex offenders released, but no one who appreciates the freedoms of our democracy should be happy about denying anyone — however egregious their offense — due process of the law.

This issue of civil confinement for sex offenders, who have a high rate of recidivism, has been out there for some time. Pataki's frustration with the lack of action by the Legislature is understandable and no doubt shared by many, but his solution was the wrong one. The need for lawmakers to create a legal process for handling these cases is clear and immediate.

And as Assemblywoman RoAnn Destito, D-Rome, said, the new law should also be specific about what level of security is to be used at the Sex Offender Treatment Program at Central New York Psychiatric Center, where some of these offenders will be confined.

There has been some controversy over whether security hospital treatment assistants or lesser-grade secure care treatment aides should be the ones handling security for the sex offenders at Marcy. The new legislation should resolve that issue with the safety of the offenders, employees and the neighboring communities — as well as the costs — in mind.

This legislation can make New York a safer place to live. It's time to act.

 

 

Proof Is Scant on Psychiatric Drug Mix for Young

The New York Times               November 23, 2006

By GARDINER HARRIS

 

Their rooms are a mess, their trophies line the walls, and both have profiles on MySpace.com. Stephen and Jacob Meszaros seem like typical teenagers until their mother offers a glimpse into the family’s medicine cabinet.

Bottles of psychiatric medications fill the shelves. Stephen, 15, takes the antidepressants Zoloft and Desyrel for depression, the anticonvulsant Lamictal to moderate his moods and the stimulant Focalin XR to improve concentration. Jacob, 14, takes Focalin XR for concentration, the anticonvulsant Depakote to moderate his moods, the antipsychotic Risperdal to reduce anger and the antihypertensive Catapres to induce sleep.

Over the last three years, each boy has been prescribed 28 different psychiatric drugs.

“Sometimes, when you look at all the drugs they’ve taken, you wonder, ‘Wow, did I really do this to my kids?’ ” said their mother, Tricia Kehoe of Sharpsville, Pa. “But I’ve seen them without the meds, and there’s a major difference.”

There is little doubt that some psychiatric medicines, taken by themselves, work well in children. For example, dozens of studies have shown that stimulants improve attentiveness. A handful of other psychiatric drugs have proven effective against childhood obsessive compulsive disorder, among other problems.

But a growing number of children and teenagers in the United States are taking not just a single drug for discrete psychiatric difficulties but combinations of powerful and even life-threatening medications to treat a dizzying array of problems.

Last year in the United States, about 1.6 million children and teenagers — 280,000 of them under age 10 — were given at least two psychiatric drugs in combination, according to an analysis performed by Medco Health Solutions at the request of The New York Times. More than 500,000 were prescribed at least three psychiatric drugs. More than 160,000 got at least four medications together, the analysis found.

Many psychiatrists and parents believe that such drug combinations, often referred to as drug cocktails, help. But there is virtually no scientific evidence to justify this multiplication of pills, researchers say. A few studies have shown that a combination of two drugs can be helpful in adult patients, but the evidence in children is scant. And there is no evidence at all — “zero,” “zip,” “nil,” experts said — that combining three or more drugs is appropriate or even effective in children or adults.

“There are not any good scientific data to support the widespread use of these medicines in children, particularly in young children where the scientific data are even more scarce,” said Dr. Thomas R. Insel, director of the National Institute of Mental Health.

Psychiatrists who prescribe drug combinations say that the ability to mix and match medications improves their chances of being able to help children who are seriously, even desperately, ill.

Dr. Joseph Biederman, a professor of psychiatry at Harvard, said that doctors commonly used multiple medicines to treat heart disease, diabetes, cancer and AIDS. “Child psychiatry is not any different,” Dr. Biederman said. “These drugs have revolutionized how we treat severe psychopathology in children.”

The controversy leaves parents in a terrible bind. Desperate to help, many agonize over whether to medicate their children.

Mothers and fathers sometimes disagree, with the dispute straining or even ending marriages. Since some psychiatric drugs can cause worrisome physical effects, parents say that they must on occasion make a terrifying choice between their child’s physical health and his mental health.

The parents interviewed for this article told their stories, they said, in hopes of gaining greater acceptance for their children and themselves. Nearly all recalled being in a store when their child threw a tantrum and feeling that onlookers branded them as bad parents. They also said they hoped to help others negotiate what many said were unequal and often fraught relationships with psychiatrists.

“We struggled so much, made so many mistakes and felt so stigmatized, I hope our story can make it easier for others,” said Jacquie Erickson of Anchorage. Her daughter, Kaitlyn Johnston, 10, has taken psychiatric drugs since she turned 5 for diagnoses that include bipolar disorder.

 

On Shaky Ground

Stimulants like Ritalin are by far the most commonly prescribed psychiatric medicines in children. But doctors routinely pair stimulants with antidepressants, antipsychotics and anticonvulsants, even though some of these medications can cause serious side effects, have few proven pediatric psychiatric benefits and lack clear evidence about how they interact or influence mental and physical development.

Last year, the Food and Drug Administration required drug makers to warn on their labels that antidepressants can cause suicidal thoughts and behavior in some children. Anticonvulsant drugs carry warnings about liver and pancreas damage and fatal skin rashes. The side effects of antipsychotic medicines can include rapid weight gain, diabetes, irreversible tics and, in elderly patients with dementia, sudden death. When drugs are combined, these risks compound.

Ms. Kehoe, who receives government financial and child-care assistance because her children are considered mentally ill, said she knew that there were risks to the drug cocktails. Both her sons are short and underweight for their age — a common side effect of stimulants — and she fears that the drugs have affected their health and behavior in other ways.

“But I don’t think the insurance would pay for it if the F.D.A. didn’t decide that children should use it,” said Ms. Kehoe, who herself takes psychiatric medication.

In fact, the drug agency has specifically warned against the use of Lamictal, one of the drugs Stephen takes, in children who, like him, do not suffer from seizures because in 8 out of 1,000 children the drug causes life-threatening rashes.

Stephen and Jacob’s psychiatrist did not reply to telephone messages left with an office secretary on three different days. Ms. Kehoe said that she asked him to speak to this reporter but that he refused. The boys have had 11 psychiatrists over the last three years, according to prescription records, and many more before that, Ms. Kehoe said.

In interviews, Stephen and Jacob said they hated taking their drug cocktails.

“Everybody hates meds,” Jacob said.

Ms. Kehoe said her youngest son, Lucas Keck, was showing signs of attention deficit disorder and might soon need to start medication.

“I see the hyperness in him,” she said. “My pediatrician has said that he would venture to say that Lucas will be A.D.H.D.”

Stephen and Jacob were Lucas’s age — 6 — when they were given their first prescriptions.

The F.D.A. requires drug makers to prove that their drugs work safely before the agency will approve them for sale in the United States. But doctors can prescribe and combine approved medicines as they see fit. Such mixing is common in medicine but rarely studied by drug makers.

Psychiatrists started mixing psychiatric medications because the drugs were only moderately effective and often caused terrible side effects, said Dr. Steven E. Hyman, the provost of Harvard University and former director of the National Institute of Mental Health. “None of these drugs by themselves do an adequate job of controlling symptoms,” Dr. Hyman said.

If one drug failed, many psychiatrists assumed that two or more drugs used together might succeed. For decades, no one studied whether this was accurate. But in recent years, a trickle of studies have examined the question, with mixed results.

In studies in adults, some combinations of two drugs have been shown to work better than single medications to improve the symptoms of depression, obsessive-compulsive disorder and the mania associated with bipolar disorder. For example, a recent large government-financed study in adults, published in The New England Journal of Medicine, found that two antidepressants worked a bit better than one for adults who suffered from chronic, severe depression. But other studies have found no benefit from commonly prescribed drug combinations.

The use of two-medicine combinations in children is on much shakier ground. Even for single drugs, the effectiveness of some psychiatric medications in younger patients is questionable: most trials of antidepressants in depressed children, for instance, fail to show any beneficial effect. But hardly any studies have examined the safety or the effectiveness of medicine combinations in children. A 2003 review in The American Journal of Psychiatry found only six controlled trials of two-drug combinations. Four of the six failed to show any benefit; in a fifth, the improvement was offset by greater side effects.

“No one has been able to show that the benefits of these combinations outweigh the risks in children,” said Dr. Daniel J. Safer, an associate professor of psychiatry at Johns Hopkins University and an author of the 2003 review.

If the evidence for two-drug combinations is minimal, for three-drug combinations it is nonexistent, several top experts said.

“The data is zip,” Dr. Hyman said.

Many psychiatrists said that they turned to drug cocktails only in desperate circumstances. “If you’ve got a 15-year-old who is cutting up her arms, you’ve got a barn on fire and what are you supposed to do?” asked Dr. Alexander Lerman, a child and adolescent psychiatrist in New York, who said he rarely prescribed combinations.

Billy and Jackie Igafo-Te’o of Jackson, Mich., are among the desperate. In the last seven years, their 12-year-old son, Michael, “has been on just about everything you can put a child on,” Mrs. Igafo-Te’o said. He is now taking four medications: an antipsychotic, an anticonvulsant, an antidepressant and a sleep medicine.

Despite the medications, Michael’s behavior has grown increasingly disruptive. He has kicked and punched holes in almost every wall of the Igafo-Te’o home. He wrenched the sink off the wall in the upstairs bathroom and pulled two bedroom doors off their hinges, damaging the frames. The family no longer fixes the damage.

During a recent visit, Michael and Mr. Igafo-Te’o were sitting on the living-room floor. Michael wanted the phone. His father held it out of reach to prevent Michael from playing with it. Michael became increasingly desperate. He cried. He cursed.

“That’s it, you have a timeout,” Mr. Igafo-Te’o said.

“No, no, no,” Michael answered. “You pimp!”

He slapped his father in the face, hard. Mr. Igafo-Te’o hustled Michael into the kitchen and forced him to sit for 20 minutes.

“What’s the purpose of all this medication if I still have to do that?” Mr. Igafo-Te’o asked.

He said he wanted to end Michael’s drug therapy. Among other side effects, the drugs have made Michael obese, which has led to asthma.

Mrs. Igafo-Te’o quietly disagreed. “I’m afraid he wouldn’t be able to focus,” she said. “I’m afraid he would regress socially.”

“Regress socially? Look at him!” her husband responded, motioning to their son, crying uncontrollably on the kitchen floor.

“I have to believe in something,” his wife mumbled and walked out of the room.

Mr. Igafo-Te’o watched her go and then smiled apologetically.

“We always debate meds,” he said.

 

 

Divergent Views

Most experts agree that some children are so violent or suicidal that a combination of psychiatric drugs is worth trying. But recently, more psychiatrists have been asking whether in some cases drugs are being prescribed for children who do not need them, or for problems that fall within the spectrum of normal behavior. The doubters are especially concerned with the growing use of drug combinations for preschoolers.

Fate Riske, 3, of Fond du Lac, Wis., takes two antipsychotics and a sleeping medicine to control what her mother, Elizabeth Klein-Riske, said were hours-long tantrums, a desire to watch the same movies repeatedly and an insistence on eating the meat, cheese and bread in her sandwiches separately.

On a recent visit, Fate played sweetly for four hours as her parents, who both have trouble walking, sat in front of a television. Sucking on a pacifier, Fate showed off her pink dress and matching shoes.

Mrs. Klein-Riske credited the drugs for Fate’s cherubic behavior during the visit. But a few weeks on a different antipsychotic led Fate to become aggressive, talk rapidly and “run around wild, totally out of control,” said Mrs. Klein-Riske, who receives government financial and child-care assistance because her daughter is considered mentally ill.

Fate’s weight ballooned in five months to 48 pounds from 30.

Dr. Gary Sachs, director of the Bipolar Clinic and Research Program at Massachusetts General Hospital in Boston, estimated that half the children referred to his clinic for research in recent years — including many who took drug combinations — had the wrong diagnosis and often did well on fewer drugs. “Even among properly diagnosed bipolar patients, many come to our program already taking medicines that interfered with each other,” Dr. Sachs said.

But Dr. Judith Rapoport, a senior investigator in child psychiatry at the National Institute of Mental Health, said that in her experience, few children were overmedicated. Dr. Rapoport studies children with schizophrenia. Before entering her study, children must be drug-free for three weeks.

“We’ve had a handful of cases who are completely normal when they get off drugs,” Dr. Rapoport said. “But most of these kids become very, very sick and unmanageable without drugs.”

The first psychiatric problem diagnosed in most children is attention deficit disorder, treated with stimulants — drugs that improve attentiveness. But when children’s problems persist, parents’ relatively good experience with stimulants often convinces them to agree to try other medicines — in some cases drugs like the antipsychotic Risperdal or the anticonvulsant Depakote that have few proven benefits in children and greater dangers, said Dr. Ranga Krishnan, chairman of the department of psychiatry and behavioral science at Duke University.

“After you get them on one drug, parents don’t seem to mind the second,” said Dr. Krishnan, who said that he had grave doubts about the growing use of psychiatric drug cocktails in children.

Antidepressants are commonly paired with stimulants, but antidepressant use has declined over the last year after the F.D.A. warning about suicide risk. In their place, physicians are prescribing combinations that include antipsychotic and anticonvulsant drugs, according to Medco. From 2001 to 2005, the use of antipsychotic drugs in children and teenagers grew 73 percent, Medco found. Among girls, antipsychotic use more than doubled.

 

On Again, Off Again

Andrew Darr of Caldwell, Idaho, whose sons took medications, said that he was opposed to it from the start. “When you come home from work and instead of getting them clawing at your feet and yelling, ‘Daddy, Daddy,’ you get a lethargic grunt, it just kills you,” Mr. Darr said.

His wife, Leslie Darr, eventually agreed to stop the medicines, but only after a family tragedy.

The Darrs have four children, Nicholas, 16, Nathan, 15, Becky, 12, and Benjamin, 9. At 3, Nicholas suffered a mild brain injury when undiagnosed appendicitis led him to suffer weeks of high fever, Mrs. Darr said.

Mrs. Darr said that she was pressured by school officials to give Nicholas a stimulant at age 6. Nathan soon followed.

Three years later, the boys had a traumatic weekend away with relatives. A month after that, Mrs. Darr said, both were hospitalized for a week and given a diagnosis of bipolar disorder and prescriptions for antipsychotic, antidepressant and sleeping medicines.

Over the next three years, Nicholas’s weight ballooned to 140 pounds from 52. Nathan went to 115 pounds from 48. Neither boy got much taller, Mrs. Darr said. They did poorly in school.

Then Becky developed a brain tumor. A nurse practitioner gave Mrs. Darr free samples of an antipsychotic drug to help her cope. After starting it, she said, she could not sleep or think straight. She realized that she had been giving similar medicines to her sons for years and she decided to wean the boys off the pills.

Their behavior immediately worsened. At one point, Nicholas left the house during a blizzard wearing only boxer shorts, Mrs. Darr said. They found him in a tire swing saying, “Baaa.”

“There were several times that we almost gave up,” Mr. Darr said.

But after four months off medication, the boys’ behavior normalized, the Darrs said, and they were transferred out of special education and into regular classes. The Darrs recently allowed the boys to spend their first evening at a mall without supervision, and in July they gave both boys their first bicycles. “They’ve come a long way,” Mrs. Darr said.

In an interview, Nicholas said the drugs “were not cool.”

“You go to school and everybody thinks, ‘Look at that retard,’ ” he said.

Still, most of the parents interviewed for this article said their children’s behavior deteriorated rapidly without medication.

Joanne Johnson of Hillsborough, N.J., described a psychiatrist’s effort to wean her 17-year-old son, Brad, off of all five of his psychiatric medicines as “the biggest mistake of our lives.”

Brad, then 13, became suicidal and was hospitalized for weeks, Ms. Johnson said.

“He went into the hospital on five drugs and came out on five different ones, but he was unstable,” she said. “It took a little over two years to find the right match again.”

Brad is now taking lithium, an antipsychotic, an anticonvulsant, an antidepressant, a stimulant and a sleeping pill.

“He’ll probably be on these for the rest of his life,” Ms. Johnson said.

~compiled from MHANYS email

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WHO urges better treatment to reduce suicide
T
he World Health Organization has called for attention to suicide as a leading cause of premature and preventable death.

Xinhua News Service   October 10, 2006
 
    LUSAKA, Oct. 10 (Xinhua) -- October 10 marks World Mental Health Day. The World Health Organization (WHO) called for attention to suicide as a leading cause of premature and preventable death.

    WHO said in a press release reaching here on Tuesday that it recognizes the need to build awareness and reduce risks in the areas of suicide and, more broadly, mental illness.

    "All too often, suicide represents a tragic consequence of failing to diagnose and treat serious mental illness", said WHO Acting Director-General Anders Nordstroem.

    "It requires a concerted public health response globally, nationally, and also from communities and families, to reduce suicide by reducing mental illness. World Mental Health Day is an important opportunity to recognize the magnitude of the problem, as well as the necessary steps towards the solutions," the acting director-general said in a release.

    An estimated 873,000 people commit suicide every year, which represents 1.4 percent of the global burden of disease. The proportion of the world disease burden due to suicide varies regionally, from 0.2 percent in Africa up to 2.6 percent in the Western Pacific region.

    "More than 90 percent of all cases of suicide are associated with mental disorders such as depression, schizophrenia and alcoholism," said Benedetto Saraceno, director of the Department of Mental Health for WHO, "Therefore, reducing the global suicide rate means effectively addressing the serious and growing burden of mental illness around the world."

    About 450 million people worldwide are affected by mental, neurological or behavioral problems, and the rate is steadily rising. In spite of existing knowledge about effective treatments for most psychiatric disorders, huge gaps in treatment and resources exist.

    A recent WHO study in 14 countries showed that in developing countries, between 76 to 85 percent of serious cases of mental illness did not receive any treatment within the prior year. Furthermore, data from the WHO Mental Health Atlas 2005 show a tremendous human resource gap in the developing regions of the world.

 
Source:  Xinhua
 

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OMH RESEARCHERS AWARDED $2.25 MILLION NIMH GRANT FOR CHILDREN'S SERVICES RESEARCH CENTER

Children's Research Center to Focus on Improving Mental Health Services for Children

ALBANY, NY -- (09/15/2005; 1550)(EIS) -- Researchers at the New York State Office of Mental Health (OMH) have been awarded a five year, $2.25 million grant from the National Institute for Mental Health, to establish the first research center on children's mental health to be funded within a state mental health authority. The primary goal of the Children's Services Research Center will be to improve knowledge about effective ways to implement and sustain evidence-based clinical services for children within New York's community-based mental health system.

The OMH-based Children's Research Center will have strong associations to Columbia University's Center for the Advancement of Children's Mental Health and the Mount Sinai School of Medicine -- both current OMH partners -- and will develop and test strategies for improving the consistent and continued use of innovative clinical services for children and youth. It will link scientific output from its studies directly into the policy-making process.

"We believe that establishing this Center directly within OMH will enhance our ongoing efforts to narrow the gap between research and clinical practice, and provide a forum for accelerating the implementation of research-based approaches directly into the public mental health system. It will provide OMH with a unique opportunity to advance the science of implementation, provide data for clinical and policy decision-making, improve current community practice, and ultimately improve outcomes for children, adolescents and their families," said Sharon E. Carpinello, RN, PhD, Commissioner of OMH and Co-Investigator for the grant.

The Center will promote collaborative research with all major stakeholders, including evidence-based treatment developers, families and family advocates, clinicians, administrators and policy-makers, including cabinet-level state authorities. Basing the Center at OMH will provide unprecedented opportunities for rapid dissemination of science-based innovations stemming from Center projects into the state's public mental health system.

"Center staff will develop and test strategies for improving the adoption and sustainability of evidence-based practices for youth," said Kimberly Eaton Hoagwood, PhD, OMH Director of Child and Adolescent Services Research, Acting Director of New York State Psychiatric Institute's new Department of Mental Health Services Research, and Principal Investigator for the grant. "The Children's Research Center will target the integration of models, methods, and strategies for improving implementation efficiency and effectiveness within New York State's policy environment through a series of rigorous studies and measurement development activities."

The Center is the most recent of a series of new initiatives and programs that together are transforming mental health services for New York State's children and families. In January 2006, Governor George E. Pataki announced the single largest investment in children's mental health services in the State's history when his Executive Budget included $62 million for OMH to support Achieving the Promise for New York's Children and Families.

The cornerstone of this historic initiative is Child and Family Clinic Plus, which will provide free voluntary screenings, access to cutting-edge treatments, and convenient in-home services. Achieving the Promise also supports clinical training in evidence-based treatments and specialized consultation, to ensure that scientifically-driven treatment models are available to front line clinicians on a statewide basis.
 

"The Children's Research Center will become a focal point for studies on strategies to improve the quality of children's mental health services", said Commissioner Carpinello, "and it will be well positioned to directly inform the larger State plans for improving clinical service delivery for New York's children and families."

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Alliance Between Disability Advocates, Bush Administration Officials Helped Develop Program To Encourage Home Care For Medicaid Beneficiaries

Medical News Today    September 20, 2006
 

NPR's "Morning Edition" on Friday examined how an "unlikely alliance" between a group of disability advocates and Bush administration officials resulted in a major change to federal funding for long-term care of Medicaid beneficiaries (Shapiro, "Morning Edition," NPR, 9/15).

HHS in July announced plans to award $1.75 billion in grants to states under a five-year program that would allow Medicaid beneficiaries to reside in their homes or in their communities, rather than in nursing homes. Under the program, states for one year will receive a higher rate of federal Medicaid matching funds for beneficiaries whom states move from nursing homes into their own homes or comm unities.

States also can use the funds to make modifications to the homes of Medicaid beneficiaries to allow their continued residence and to provide respites for family caregivers. States must agree to continue to provide Medicaid beneficiaries with home or community care for at least one year after the higher rate of federal Medicaid matching funds ends. HHS said that the program could reduce costs because nursing home care is more expensive than home or community care (Kaiser Daily Health Policy Report, 7/27).

According to NPR, the relationship began in 2002 when 200 protestors in wheelchairs blocked traffic at an intersection near the White House and started discussions with Mark McClellan, current CMS administrator and a member of the president's Council of Economic Advisers at the time. Since his appointment to CMS, McClellan met four times annually with Bob Kafka, executive director of the American Disabled for Attendant Programs Today.

< p> Although some health care and disability advocates criticize some of the program's provisions, such as one allowing states to change benefits and charge copayments, McClellan said the Money Follows the Person program is the "biggest change in long-term financing in decades" and that his work with ADAPT is one of his proudest accomplishments from his tenure.

 

According to NPR, 30 states have told McClellan that they would like to participate in the program, which began accepting grant applications two weeks ago. The NPR segment includes comments from Kafka and McClellan ("Morning Edition," NPR, 9/15).

The complete segment is available online in RealPlayer. Expanded NPR coverage, including a transcript of the segment, additional audio from ADAPT members and photos, is available online.

------------

Disabled Activists Win Battle for Independent Care
by Joseph Shapiro National Public Radio </ p>

Morning Edition, September 15, 2006 · Earlier this summer, federal officials announced what they call the boldest change in the way the government pays for long-term care since the invention of Medicare and Medicaid. Washington will now provide $2 billion to states that help people leave a nursing home - instead of paying for them to live in one.

That decision came because of a highly unlikely alliance between a group of disabled activists in wheelchairs who came to Washington trying to get themselves arrested at the White House gates -- and the Bush administration aide who ended up listening to them.

The Wheels Begin Turning

The momentum for change began four year years ago when about 200 demonstrators in wheelchairs rolled into the intersection closest to the White House and shut down all traffic.

"It was really quite a scene," says Bob Kafka, a leader of the group American Disable d for Attendant Programs Today (ADAPT). "It was thundering and lightning. It was sporadically raining."

ADAPT uses non- violent direct action tactics to enact policy changes for disabled individuals. Many of the ADAPT protestors are severely disabled and require the help of an attendant to move.

Still, the protestors travel around the country and practice civil disobedience. They want people with disabilities to get out of nursing homes and for the government to pay for personal care attendants. Getting an attendant for a few hours a day makes the difference between whether they can live in their own homes or end up moving into a nursing home.

Four years ago, the protestors tied up traffic for three hours in front of the White House and the police were getting ready to make arrests when a White House aide got an urgent phone call.

"I was working in my office on probably about 15 other issues," says Mark McClellan, who w as at the time a member of the President's Council of Economic Advisors. "I got a call from the chief of staff of the White House, saying, 'Mark, there are some people outside who are blocking traffic at the intersection of 17th and Pennsylvania. It's coming up on rush hour. Go fix it.'"

McClellan went outside, where he met the demonstrators and Bob Kafka in the middle of the intersection. His clothes and young looks contrasted with Kafka's long gray hair and wild beard. The two men could not be more different in terms of political beliefs or style. But on that rainy day outside the White House, they found things in common.

The Administrator and the Activist

Both Kafka and McClellan are fascinated by the policy details of how the government cares for the elderly and disabled. Both also believe that individuals often make the best choices about their own care.

McClellan practiced medicine before joining the Bush administration. "Many of my patients had disabilities and chronic illnesses," he says. "And in those experiences, there were so many cases if you just listen to the patient -- if you could get the patient involved in deciding what treatments were best for them -- you could get the better results."

After President Bush appointed McClellan the head of the agency that runs Medicare and Medicaid, he met with Kafka and other ADAPT members four times a year.

Earlier this year, the White House proposed legislation to start a program called Money Follows the Person, which gives states extra money to move elderly and disabled people out of nursing homes and into their own residences. Congress alotted $2 billion over the next five years for the program -- still just a tiny portion of what Medicaid spends on nursing homes.

Bob Kafka says it's enough to move at least 100,000 people. "Mr. McClellan has made us a believer in bureaucrats," he says, "That they can keep their word and follow through."

Though some disability and health advocates object to other parts of the Medicaid reform law -- specifically the part which allows states to change benefits and charge co-payments -- McClellan says those objections miss the historic significance of the new long-term care policy.

"This is the biggest change in long-term financing in decades," he says.

McClellan recently announced his resignation. Though he'll be most remembered for setting up the new Medicare drug benefit, he says one of his proudest accomplishments was his work with ADAPT.

Adapt and Move On

For Bob Kafka, the work isn't over. He was back in Washington this week, where several hundred ADAPT protestors surprised a few security guards at the side entrance of a downtown hotel, where a trade organization for managed care companies was having their legislative conference.

The protestors in wheelchairs and scooters rushed into the ornate hotel lobby and took it over. "We as people with disabilities want the managed care community to understand that we want to live on our own," says Kafka.

The ADAPT demonstrators held the hotel lobby for two hours and got their meeting with the managed care officials.

But Kafka has one other meeting before he leaves Washington. Today, he and other ADAPT leaders will meet with Mark McClellan to talk about how the new federal program is progressing.

They will take about how McClellan's agency just started taking applications for grants two weeks ago. Thirty states have recently told McClellan that they want to take part in the new program to help elderly and disabled people move out of nursing homes.


Source:  Medical News Today
Source:  National Public Radio

 

 

 

 

 

 

 

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NY TIMES

U.S. Issues New Rules on Schools and Disability

By DIANA JEAN SCHEMO

Published: August 4, 2006

WASHINGTON, Aug. 3 — For more than 25 years, federal law had required that schools nationwide identify children as learning disabled by comparing their scores on intelligence tests with their academic achievement. This meant that many students had to wait until third or fourth grade to get the special education help they needed.

Overview of the Regulations (Education Department)

In regulations issued today after changes to the law, the federal Education Department said states could not require school districts to rely on that method, allowing districts to find other ways to determine which children are eligible for extra help.

It was the final step in the federal government’s repudiation of the old approach, which had come under severe criticism from advocates for children with disabilities, testing experts and eventually federal officials themselves. Advocates for those children applauded the change.

“If you talk to principals and special ed directors, there is pent-up demand for better ways to serve struggling kids than waiting until they crash and burn in third and fourth grade,’’ said James H. Wendorf, executive director of the National Center for Learning Disabilities. The new rules also require schools to alert parents as they begin exploring whether children may need special education, another change that won praise from advocates for children with disabilities.

The regulations come after Congress updated laws covering special education for some six million schoolchildren nationwide in late 2004.

Comparing intelligence tests with academic achievement, known as the discrepancy model, came under intense criticism in the debates over the law and over special education.

Federal officials and advocates for children with disabilities contended that the practice of waiting for children to fall behind on tests in third or fourth grade before getting them extra help consigned them to failure, and opened the way for the disproportionate numbers of poor and minority children to be labeled as needing special education.

The 2004 law abandoned reliance on that approach. And the new regulations favor alternative methods of identifying children who need services, like evaluating the response of struggling children to extra help before the third grade.

The 2004 law also streamlined procedures and reduced the paperwork involved in providing children special education services, and relaxed burdens on schools when children with disabilities had behavioral problems.

A draft of the regulations published in June 2005 prompted an outpouring of 5,500 letters and comments to the Education Department from advocates for children with disabilities, as well as parents, teachers’ unions, and state, district and local education officials.

The department posted the final regulations on its Web site today, along with answers to each of the comments it received. The final regulations will be published in the Federal Register on Aug. 14, and will take effect 60 days later.

In unveiling the new rules, Education Secretary Margaret Spellings said her priority was “that we not lose our vigilance for educational attainment for every child.”

Advocates for children with disabilities said they were disappointed that the regulations did not address some problems they saw in the 2004 federal law.

For example, the law says that instead of reviewing each disabled child’s educational plan every year automatically, schools could review them only once every three years, provided parents agree to the change. The regulations do not help ensure parents are properly notified, advocates said.

“But who is going to make sure that parents now know what they’re giving up if they agree to that?” said Ricki Sabia, associate director of the National Down Syndrome Society Policy Center. “The department could have made clear what constitutes that agreement.”

 

 

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