City Signs Contract to Track Special Education Data

http://www.nytimes.com/2009/01/14/education/14special.html?_r=1

City Signs Contract to Track Special Education Data

By ELISSA GOOTMAN
Published: January 13, 2009
The New York City Department of Education, long criticized for a haphazard approach to20special education, has signed a $55 million contract with a Virginia company to overhaul the way it tracks information about 190,000 students with disabilities.

Advocates say that the new system is desperately needed, and that it will replace an antiquated computer system, which is supplemented by roomfuls of paper documents. The combination, they say, too often results in children being denied services they need and are required by law to receive.

“We know that these problems happen all the time in terms of delays in service or deprivation of service, but what we don’t know accurately is exactly how widespread they are and where they occur,” said Kim Sweet, the executive director of Advocates for Children, which monitors the school system and has sued it on behalf of students with disabilities. “Whenever advocates or researchers ask for data to assess how the Department of Education is doing in terms of compliance with special education law, the D.O.E. will say, ‘Well, we’ll give you our data, but we can’t rely on it because it’s not accurate.’ And that’s a major problem in terms of accountability.”

The contract with the company, Maximus, is for five years. The Education Department estimated that, in addition, it would=2 0spend $23 million over the next five years on related costs, including training and equipment.
The contract, signed Jan. 5 and expected to be publicly announced on Wednesday, comes as parents and principals throughout the city are bracing for cuts of up to $1.5 billion in the department’s $20 billion budget next year.

Leonie Haimson, executive director of Class Size Matters, an advocacy group that has been critical of the school system’s $80 million project for tracking information like test scores, says she believes that “more attention and better record-keeping are absolutely necessary to ensure that special education students get the services that they need.”

But, she added, “I would want to make sure that the data is accurate, because in the past the data has been severely flawed that they’ve entered into these massive systems.”

Ms. Haimson said there should also be “really strict oversight and the ability of parents to access the information for their own children, to make sure that it’s not arbitrarily changed by people at D.O.E. without their knowledge.”
Maximus, a company with more than 6,000 employees that does consulting and provides services to government agencies, ran into some controversy in a previous venture with New York City.

During the Giuliani administration, the city comptroller tried to block the company from receiving welfare-to-work contracts, arguing that the company had improperly used connections with city officials. After City Council hearings and lawsuits, the contracts went forward, but the Bloomberg administration did not renew them.
In a separate case unrelated to New York City, Maximus agreed in 2007 to pay the federal government $30.5 million to settle an investigation into its work preparing Medicaid claims on behalf of the District of Columbia.
Education Department officials said they had included a provision in the special education contract that would prevent employees involved in the Medicaid case from working on the city contract. They expressed confidence in the company, which was selected after the city issued a request for proposals a year ago.

“T his is something that people have been asking for for a very long time,” said Linda Wernikoff, the Education Department official in charge of special education.
Referring to Individualized Education Programs, the federally mandated documents that outline which services special education students need, she said: “If you develop an I.E.P. online and that child is in the system, he can’t fall between the cracks, he’s right there.” When the I.E.P.’s are on paper, and someone has to enter the data in a computer program, she said, “there’s a lot of chance for human error.”
In addition to 157,305 students who attend city public schools, the Maximus system will be used to track 33,084 others — mostly New York City residents — who attend private or parochial schools but receive services like physical and occupational therapy through the department. Ms. Wernikoff said she expected that a small group of about 30 schools would be able to use the system by fall, and that the entire system would be up and running by the spring of 2011.

While Ms. Sweet, of Advocates for Children, welcomed the new system, she said, “Absolutely, this should have been done sooner.”

DISABILITIES

http://www.whitehouse.gov/agenda/disabilities/
DISABILITIES
"We must build a world free of unnecessary barriers, stereotypes, and discrimination.... policies must be developed, attitudes must be shaped, and buildings and organizations must be designed to ensure that everyone has a chance to get the education they need and live independently as full citizens in their communities."
-- Barack Obama, April 11, 2008

Barack Obama and Joe Biden have a comprehensive agenda to empower individuals with disabilities in order to equalize opportunities for all Americans.
In addition to reclaiming America's global leadership on this issue by becoming a signatory to -- and having the Senate ratify -- the UN Convention on the Rights of Persons with Disabilities, the plan has four parts, designed to provide lifelong support and resources to Americans with disabilities. They are as follows:
First, provide Americans with disabilities with the educational opportunities they need to succeed by funding the Individuals with Disabilities Education Act, supporting early intervention for children with disabilities and universal screening, improving college opportunities for high school graduates with disabilities, and making college more affordable. Obama and Biden will also authorize a comprehensive study of students with disabilities and issues relating to transition to work and higher education.

Second, end discrimination and promote equal opportunity by restoring the Americans with Disabilities Act, increasing funding for enforcement, supporting the Genetic Information Nondiscrimination Act, ensuring affordable, accessible health care for all and improving mental health care.

Third, increase the employment rate of workers with disabilities by effectively implementing regulations that require the federal government and its contractors to employ people with disabilities, providing private-sector employers with resources to accommodate employees with disabilities, and encouraging those employers to use existing tax benefits to hire more workers with disabilities and supporting small businesses owned by people with disabilities.

And fourth, support independent, community-based living for Americans with disabilities by enforcing the Community Choice Act, which would allow Americans with significant disabilities the choice of living in their community rather than having to live in a nursing home or other institution, creating a voluntary, budget-neutral national insurance program to help adults who have or develop functional disabilities to remain independent and in their communities, and streamline the Social Security approval process .

Autism

President Obama and Vice President Biden are committed to supporting Americans with Autism Spectrum Disorders (“ASD”), their families, and their communities. There are a few key elements to their support, which are as follows:

• First, President Obama and Vice President Biden support increased funding for autism research, treatment, screenings, public awareness, and support services. There must be research of the treatments for, and the causes of, ASD.

• Second, President Obama and Vice President Biden support improving life-long services for people with ASD for treatments, interventions and services for both children and adults with ASD.

• Third, President Obama and Vice President Biden support funding the Combating Autism Act and working with Congress, parents and ASD experts to determine how to further improve federal and state programs for ASD.

• Fourth, President Obama and Vice President Biden support universal screening of all infants and re-screening for all two-year-olds, the age at which some conditions, including ASD, begin to appear. These screenings will be safe and secure, and available for every American that wants them. Screening is essential so that disabilities can be identified early enough for those children and families to get the supports and services they need.

YAI National Institute for People with Disabilities Network PARENT SUPPORT SERIES for Caregivers of People with Autism Spectrum Disorders (ASD)

Location: 460 West 34th Street 11th Floor
New York, NY 10001

Structure: 1st Half Presentation, 2nd Half Support

Fee: None!


MUST call YAI LINK to register at
212-273-6182
or toll free at 1-866-2-YAILINK


PARENTS AND CAREGIVERS ONLY,
NO CHILDREN PLEASE


Please check www.yai.org/autismsupport often as we are adding groups regularly!



Supported in part by grants from NYS OMRDD and The New York City Council’s “1 in 150 Autism Awareness Initiative”




Date Time Presenter(s) Topic
Jan. 21st
Wednesday 10 am – 12:30 pm Bernice Polinsky, BA, Parent and Board Member of AHA Association Living with Autism: What Every Parent Should Know

Feb. 4th
Wednesday 10 am – 12:30 pm Charles Cartwright, MD Autism Diagnosis: Do I Need an ADOS?

Feb. 10th
Tuesday 10 am – 12:00 pm Iris Varela, MSW General Support/Open Topics

Mar. 5th
Thursday 6:00 – 8:00 pm Katie DeFoe, MS Ed Understanding the DD Service System for People with Autism

Mar. 11th
Wednesday 10 am – 12:30 pm Peter Dellabella, MD The Overlap Between Autism and ADHD

Mar. 19th
Thursday 10 am – 12:30 pm Michael Boardman, MA, BCBA;
Anisha Foster, MA, BCBA; and
Maureen Dormody-Shields
MS Sp Ed ABA and Structuring Play in the Home During Early Childhood

Mar. 24th
Tuesday 10 am – 12:30 pm Kevin Travers, LCSW Independence and Dependence: Learning to Let Go

April 1st
Wednesday 10 am – 12:30 pm Brigida Hernandez, PhD and Nicole LePera, MA Making Sense of Research


Supported in part by grants from NYS OMRDD and The New
York City Council’s “1 in 150 Autism Awareness Initiative”

Scientists on Staten Island at forefront of war on autism

by Stephanie Slepian / Staten Island Advance

Saturday January 03, 2009, 11:15 AM

Advance photo/Michael McWeeneyDr. Jerzy Wegiel holds up a cross section of human brain tissue that is used in research at the New York State Institute for Basic Research in Developmental Disabilities (IBR) in Willowbrook.

How early can autism be detected?

It's a question the world's leading scientists are seeking to answer -- and many of those scientists can be found on Staten Island in the labs of the New York State Institute for Basic Research in Developmental Disabilities (IBR) in Willowbrook.
IBR's findings routinely put it at the scientific community's international forefront. On the Island, however, it exists in a quiet anonymity.
Its four low-slung buildings are nearly obscured by a row of trees on Forest Hill Road and the backside of the sprawling campus of the College of Staten Island.
But inside those buildings, scientists in seven research departments and 45 labs are pushing the limits of what is already known about autism and other developmental disabilities.

Simply put: Their research can help families who are living with autism by uncovering more effective means to diagnose, treat and determine the cause of the disorder that affects one in every 150 children to varying degrees.
"Some of our studies could potentially suggest autism in the first months of life versus a diagnosis that is usually made between 2 to 3 years of age," said Dr. W. Ted Brown, IBR's director. "It would be really helpful to know which children are at risk at one month of age.

"The earlier we diagnose it, the earlier we can treat it. With intensive behavioral therapies at a very young age, [children] can be mainstreamed in school."
IBR, the research arm of the state Office of Mental Retardation and Developmental Disabilities (OMRDD), has been making scientific headlines since it was founded in 1967, as the first facility to study mental retardation.
Work done there has led to the first pre-natal screenings for Fragile X syndrome -- the most common known cause of inherited developmental disabilities and the most common known single-gene cause for autism -- and the discovery of PKU, the only form of mental retardation that can be treated at birth.

BREAKTHROUGHS MADE
Over the years, they've made breakthroughs in Down Syndrome, Alzheimer's disease, Batten disease and fetal alcohol syndrome. An outpatient clinic offers sophisticated diagnostic tests to catch things routinely missed on a pediatrician's exam. Among IBR's educational programs is the Center for Developmental Neuroscience and Developmental Disabilities, run jointly with the College of Staten Island.
The institute's commitment to finding the causes of all developmental disabilities continues today, although there has been a shift in IBR's research.

"I've been focusing more and more on autism because it is being recognized as very prevalent in the community," said Dr. Brown, an internationally recognized expert on Fragile X and progeria, a premature aging disease.
In IBR's Department of Developmental Neurobiology, Dr. Jerzy Wegiel catalogues slides that contain life's most delicate matter: Cross sections of human brain tissue.

The postmortem tissue -- which is age-matched from donors both with and without autism -- allows scientists to see directly into the brain's most remote regions in search of structural and chemical abnormalities.
"The nerve cells are smaller and very compact," said Dr. Wegiel, department chairman, pointing to images on a computer screen brought up when the violet-stained sections of an autistic brain are placed under a microscope's lens.
The smaller neurons, he said, may reduce the capacity of different regions of the brain to communicate with each other.

"As we learn what the structural changes are, we can start working on treatments. We can translate the basic research into practical application."
IBR scientists have also identified a gene that may determine the severity of autism, are analyzing the DNA of autistic siblings and their parents and are studying the use of an experimental drug that has increased development of new brain cells and improved cognitive function in a small sampling of patients.
They have also found that infants admitted into neonatal intensive-care units are at an increased risk to develop autism -- about 2.5 times the population norm.
Much of this research will be shared among scientists as part of the New York State Autism Consortium, a partnership of the state's leading research and clinical centers that will be coordinated by IBR.

A TROUBLED PAST
But for all its successes, IBR's history has hardly been trouble-free. Throughout the 1990s and earlier in this decade, the state and IBR maintained an adversarial relationship. Tensions peaked in 2003 when then-Gov. George Pataki threatened to close the facility for good.

Even the previous commissioner of its parent agency was ready to lock the doors.
But elected officials and the community passionately argued that IBR was a lifeline for thousands of families who have loved ones with developmental disabilities.
Because of the public rallies and bipartisan support for IBR's continuance, the state Legislature passed a budget over Pataki's head that spared the facility.
"From my perspective, what's changed, is we have looked very carefully to understand what the value of IBR is and how it absolutely adds to our mission," said Diana Jones Ritter, commissioner of the state Office of Mental Retardation and Developmental Disabilities, whose tenure began after IBR was spared.
"We are expecting extra results from our Autism Consortium and the research we're doing on all developmental disabilities. We are just continuing on our journey."
But IBR faces a new crisis in that journey: Cutting costs as the state's fiscal resources shrink.

IBR, which employs 307, including more than 100 Ph.D.-level scientists, receives $24 million from OMRDD, and another $7 million in grant money.
"Every operation within my organization, and IBR is not exempt, is being challenged to and required to come up with really good cost savings to contribute," Ms. Ritter said.

For IBR, that means more aggressively pursuing grant dollars.
"I believe IBR is one of the best-kept secrets and we don't do enough to make sure people understand the real exciting groundbreaking research being done there, especially with autism," said Gary Lind, OMRDD's deputy commissioner of policy and enterprise solutions.

"We're very much encouraged that good science will lead to other good science and that it will be recognized by the grant and funding community."
It's a hope IBR scientists, like Dr. Janusz Frackowiak, more accustomed to geek-speak than money matters, cling to as they work every day. Still, as he looks for research dollars, Dr. Frackowiak never loses sight of why he is doing what he is doing.

As he prepared to dissect the peanut-sized brain of a genetically altered mouse, which exhibited the memory and learning deficits associated with developmental disabilities, he could speak only of the possibilities.
"Does the mouse remember where its food is?" asked Dr. Frackowiak, the head of the Laboratory of Cellular Biology, describing the changes he looks for in the mice. "Did it go from finding its platform in six seconds to finding its platform in 30 seconds?

"It's impossible to do this on patients, but if we can fix it in mice," he said, "who knows what we can do someday?"