December 2008
November 2008
October 2008
September 2008
August 2008
July 2008
May 2008
April 2008
March 2008
February 2008
January 2008
DHS Announces the Release of The New Jersey Adults with Autism Task Force Report
The Department of Human Services (DHS) announced the release of The New Jersey Adults with Autism Task Force Report. Read further details. Download The Adults with Autism Task Force report.
Legislation (A4057/S2559) which was signed on September 12, 2007 by Governor Jon Corzine (PL 2007, c. 173), created The New Jersey Adults with Autism Task Force.
Governor Corzine Announces the Announces the Creation of an Office of Autism
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Governor Corzine announced the creation of an Office of Autism during Autism New Jersey's 27th Annual Conference held in Atlantic City. The future is looking a little brighter for those coping with the disorder.
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"I will announce that we're going to create an office of autism service for adults.”
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Watch video
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The Listening Tour Summit is a Resounding Success
In an unprecedented gathering of families and state leaders, Autism New Jersey staff, legislators, opinion leaders, policy makers, service providers, advocates, experts, families and individuals with autism spectrum disorders participated in the agency’s Listening Tour Summit on June 20 in Newark’s North Ward Center to begin developing a “Blueprint for Lifetime Support Services for Families and Persons with Autism.” More than 200 members from diverse communities participated in the all-day meeting. The Blueprint will guide Autism New Jersey in its advocacy efforts to affect new legislative initiatives and policy changes to improve the lives of state residents with autism.
Watch New Jersey Network's coverage on this unprecedented event.
Click the link above and use the scroll bar on the right to find the headline "Autism Summit."
Gov. Corzine conducted “A Discussion on Autism”
On Thursday April 30th Governor Jon Corzine and Department of Health and Senior Services Commissioner Heather Howard conducted “A Discussion on Autism”, in which many of our constituents participated. The Governor and Commissioner heard a variety of issues impacting the lives of families impacted by autism. Such forums enable Autism New Jersey to advise state decision makers on the laws and regulations that would help to improve the lives of individuals with ASDs.
December 2008
New Jersey Individuals with Disabilities Wait Years for Homes
Although she knew the letter from the state was coming, Elaine Buchsbaum was not prepared for how devastating it would be.
Seven years ago, she and her husband put their son Matt's name on the community housing waiting list for people with developmental disabilities.
Earlier this month, the unwelcome news came in the mail from the state Division of Developmental Disabilities. Matt Buchsbaum is number 1,126 on a list of 4,601 people who need a home.
When the Buchsbaums last asked the state for their son's placement number it was 1,327. And that was two years ago.
"For me, it's overwhelming. I don't see where this is going," Buchsbaum said. "The answer can't be there is no service at all."
Buchsbaum, 62, said she sees no progress in the state's attempt to integrate disabled people into the community, especially if you take into account those who have moved off the list because they either left the state or died.
The division said it sent the placement letters this month to keep families more informed in response to complaints the process was bureaucratic and impersonal.
Division spokeswoman Pam Ronan said notifying families about their loved ones' place in line for government-subsidized housing will now be "an annual event."
What the state won't be able to tell families, however, is how long they will have to wait for a home because funding levels change from year to year.
For Stephen Somich, any wait is too long.
The 26-year-old man with Down syndrome has a job, a girlfriend, and a strong will to take the next step. He would like to leave his family home in Whippany and live in his own apartment, just like his younger brother did after graduating from college.
But the Division of Developmental Disabilities made it clear just how far from ready the state is to help him. He is No. 4,552, according to his father, Steve Somich.
Seeing his son's number forced the elder Somich to consider the cold reality of state economics. Without a steady infusion of government funding to jump-start a nearly dormant placement effort, Stephen Somich might be waiting for his independence until his parents, both age 55, are too old or sick to look after him.
"I realized, given where they are with placing people, my son would never get a placement unless something happened to me and my wife," Somich said flatly.
"Emergency" placements, such as when a parent gets sick or dies, drive the movement of nearly 300 people a year. Often they end up in one of the state's seven "developmental centers." For many, this is not the inclusive environment and independent life they had longed for.
Non-emergency placements, made with dedicated state funds, have dwindled since 2002. Last year, the state dedicated $2.8 million, enough to move about 28 people from the list.
The notification letters have been motivating families to redouble their lobbying efforts in Trenton for more funding. The Somich family, father and son, became citizen lobbyists this year, making appearances at legislative hearings to urge lawmakers to find money in the state budget to dedicate to community housing.
My son "saw the letter on the table and read it and said, 'What does this mean?' I said it means we have to do more lobbying. He said, 'Okay,'" Somich said. "He knows nearly all his friends are living at home, too."
This year, the budget contains $12.5 million, a more promising number, to assist people on the waiting list, Ronan said.
But before the housing waiting list is addressed, assistant commissioner Ken Ritchey of the Division of Developmental Disabilities set aside $1 million to assign roughly 200 disabled people to day programs, which are in short supply.
"Ken Ritchey didn't want anybody sitting home with nothing to do," Ronan said.
That leaves $11.5 million to put together housing plans for roughly 100 people, she said.
Meanwhile, families further down the list are encouraged to call their case managers at the division to talk about programs like respite and physical therapy that might be available while they wait, Ronan said.
"Maybe we can provide some support right away," she said.
Dinah Fox of Randolph said she hopes the letter does more than get parents talking to the state. They need to talk to each other to devise their own plans because the budget outlook next year is grim.
Her daughter, Robyn, is ranked 3,692 after waiting three years on the priority list, she said. "This is abysmal and unacceptable," she said.
Fox and her friend, Nancy Delaney, have already pitched an idea to Gov. Jon Corzine that would unite parents in common geographic areas to pool their state funds to purchase and set up homes for their disabled loved ones. They would then arrange for a flow of existing state and federal entitlements to help pay the ongoing operating costs.
But so far, the idea has not gained traction. Fox is also devising a plan to try to get the town of Randolph to build low-income housing for disabled adults like her daughter.
Fox said it was the right thing to do for state Human Services officials to send the letters.
"I hope they did it for motivation ... to get parents riled up," she said. "I think their (Human Services officials') hands are tied."
November 2008
Mandatory Autism Registry Proposed
The state's first mandatory autism registry was proposed by the state's Department of Health and Senior Services on Monday.
The registry, proposed as an amendment to the long-standing birth-defects registry, would require health care professionals to report those diagnosed with autism at any time from the day they were born through their 21st birthday.
Although autism is a developmental disorder not a birth defect, the state is taking a similar mandatory approach as with its successful birth-defects registry.
Children with autism can currently be registered with the state's special-needs registry, but it's done on a voluntary basis.
"The goal has always been to use this information to identify possible clusters or issues with different parts of the state," said Gloria Rodriguez, director of the Special Child Health and Early Intervention Services for the Department of Health and Senior Services.
Rodriguez said the purpose of the registry is to connect people with autism in New Jersey to state-provided social- and economic-assistance services. She said earlier access to services for people with autism usually leads to better outcomes later in life.
While autism advocacy groups and the public need time to review the proposed amendment, many hope the proposal further addresses some of the concerns families have regarding autism support.
"Hopefully, this is one step toward really planning the needs for the autism community," said Leslie Long, director of public policy and systems advocacy for Autism New Jersey, formerly the New Jersey Center for Outreach and Services for the Autism Community.
Though mandatory, the proposed amendment would allow parents or guardians to choose to withhold personal information, such as names and addresses. Rodriguez said nonspecific information would still be required - essentially making the person just one more number in the total autism population - but its usefulness would be limited because it would block outreach.
A 60-day public comment period on the autism registry is open until Jan. 16. The state will not accept e-mails. Comments can be sent to: Ruth Charbonneau, director of the Office of Legal and Regulatory Affairs, New Jersey Department of Health and Senior Services, P.O. Box 360, Trenton, N.J. 08625. The comments and their responses will be published in the state register after the period ends. The register can be accessed through most libraries, according to the DHSS.
DRNJ Special Education Survey
Disability Rights New Jersey (DRNJ), New Jersey's designated protection and advocacy system for people with disabilities, is interested in learning more from parents about their experiences in IEP meetings. Click here to provide information regarding your most recent IEP meeting.
Department of Health and Senior Services Proposes New Rules and Amendments at N.J.A.C. 8:20, which establishes the Birth Defects Registry
The Division of Family Health Services in the Public Health Services Branch of the Department of Health and Senior Services proposes new rules and amendments at N.J.A.C. 8:20, which establishes the Birth Defects Registry.
The proposal would establish an autism registry and a severe neonatal jaundice registry.
This proposal would require health care professionals to report diagnoses of autism in children from birth through twenty-one years of age. N.J.S.A. 26:2-187 requires the Department of Health and Senior Services to implement the reporting of autism and to establish an autism registry. Autism is a developmental disorder of brain function that is typically manifested by impaired social interaction, problems with verbal and nonverbal communication and imagination, and unusual or severely limited activities and interests.
Under the proposal, health care professionals would not report the personal identifying information of a child diagnosed with autism if the child's parent, legal guardian or custodian objects to the reporting of this information, or if the individual through age twenty-one who is diagnosed with autism objects to the reporting. Health care professionals would be required to inform the parent, legal guardian, custodian or individual through age twenty-one of the right to refuse to report identifying information.
The proposal would require clinical laboratories to report newborns with severe neonatal jaundice, a condition that is caused by a buildup of bilirubin, an orange-yellow pigment found in bile. Toxic levels of bilirubin can cause severe neurological damage called kernicterus. N.J.S.A. 26:8-40.21 requires the Department to establish a severe neonatal jaundice registry.
The proposal would also make the reporting requirements for congenital conditions more consistent with the Centers for Disease Control and Prevention (CDC) Guidelines, and extend the reporting requirements for congenital conditions from birth through five years of age.
Under the proposal, the information on individuals with these conditions that is reported to these registries would remain confidential. The data contained in these registries would be used for public health research, needs assessments, and public health investigations.
The notice of proposal appears in the November 17, 2008 issue of the New Jersey Register.
The public has until January 16, 2009 to comment on the proposals. Persons wishing to comment on the proposals must submit their comments in writing to Ruth Charbonneau, Director, Office of Legal and Regulatory Affairs, New Jersey Department of Health and Senior Services, PO Box 360, Trenton, NJ 08625. Written comments on the proposals must be postmarked on or before January 16, 2009, which is the close of the 60-day public comment period for the proposals.
Autism New Jersey Supports New Legislation
OCEAN COUNTY - Representatives from Autism New Jersey, formerly COSAC, garnered support from the Ocean County Board of Chosen Freeholders for NJ Senate Bill 1650, The Self-Directed Support Services for Persons with Developmental Disabilities Rights Act. The proposed legislation would add protections to individuals with developmental disabilities, who chose self-directed residential supports through the Division of Developmental Disabilities. Presenting information on the bill to Freeholder Director Joseph H. Vicari from the left are: COSAC Director of Public Policy and Systems Advocacy Leslie Long, COSAC Executive Director Dr. Linda Meyer and Public Policy and Systems Advocacy Coordinator Debbie Charette.
October 2008
Federal Government Approves New Jersey 's Expanded Community Care Waiver
Press Release:
October 17, 2008
222 South Warren Street
Trenton, NJ 08625
Contact: Pam Ronan
(609) 292-3703
TRENTON New Jersey Department of Human Services' (DHS) Commissioner Jennifer Velez announced today that DHS' Division of Developmental Disabilities (DDD) has received approval from the federal Centers for Medicare and Medicaid Services (CMS), to amend the state's existing Home and Community Based Services Waiver. These changes will allow DDD to receive matching funds for many community-based services - that currently are funded only with state dollars - for people with developmental disabilities.
The waiver, which has been in place since 1982, is commonly referred to as the Community Care Waiver (CCW) and allows the state to use Medicaid funding to pay for certain services provided to people living in the community, rather than in an institution. Most of these services are provided by contracts with social service agencies.
"The state's amended Community Care Waiver is both beneficial to individuals and fiscally responsible," said Commissioner Velez. "More of the services we provide will now be eligible for cost-sharing, helping the state to continue providing these services through tough fiscal times."
Through the amended waiver, DDD will be able to bill the federal government for a portion of the cost of a number of services that currently are funded entirely by the state, including community transition services, support coordination, assistive technology devices and non-medical transportation needs. In addition, through amended waiver language, DDD can now increase respite service providers and bill hourly for day habilitation and supported employment services. The amendment is retroactive to January 1, 2008.
"This amended waiver also now provides federal matching funds for the budgets granted to people who are self-directing their services," said Assistant Commissioner Kenneth Ritchey , who oversees DDD. "This option provides individuals greater choice in the services that they receive and the way in which they receive those services."
More than 40,000 people, including almost 2,900 who reside in one of the state's seven developmental centers, are eligible for services funded by DDD. The division's $1.3 billion budget for SFY2009 includes more than $900 million in contracts with agencies that provide community-based services throughout New Jersey.
Click here to download Autism New Jersey's / COSAC's Medicaid Fact Sheet.
"Self-Directed Support Services for Persons with Developmental Disabilities Rights Act," introduced October 16 at State House
A meeting of the Senate Health, Human Services and Senior Citizens Committee will include a discussion about Senate Bill 1650, "The Self-Directed Support Services for Persons with Developmental Disabilities Rights Act," on October 16 at 10:00 AM, Committee Room 1, first floor at the State House Annex in Trenton, NJ. Senator F. Joseph Vitale (D-19th legislative district) is the Chairman of the committee. The legislation would add protections to individuals with developmental disabilities who chose self-directed residential supports through the Division of Developmental Disabilities. The meeting is open to the public. If you would like more information about this bill, please call COSAC Public Policy and Systems Advocacy Director Leslie Long at 609.883.8100, extension 48.
Parents Urge Passage of Bill to Require Autism Coverage: Insurers Would Pay for Treatment
The Washington Post
A busload of Loudoun County parents traveled to Richmond on Monday to speak before a state panel considering a bill that would require health insurers to cover treatment for children with autism.
Some brought their autistic children to the hearing, which lasted five hours and featured testimony from parents across the state as well as insurance industry lobbyists.
House Bill 1588 would require insurers to provide up to $36,000 a year per child for autism treatments, including an intensive and costly therapy program known as applied behavior analysis, or ABA. ABA, which has been approved by the U.S. surgeon general as a treatment for autism, is rarely covered by insurers in Virginia, and parents who choose it often pay thousands of dollars a year in out-of-pocket expenses.
Carol Nunez, a Sterling resident who brought her 6-year-old autistic son, Ethan, to the hearing, said she and her husband, Rick, spent almost $5,000 for therapy services covering potty training.
"ABA came into our home at 8 a.m. in the morning till 8 p.m. at night for four weeks," she said. "It was successful. He's now 100 percent potty-trained at home.
"ABA is most effective if applied early," she added. "Had we had insurance to cover [more treatments], I can't fathom the changes we would have seen."
Del. David E. Poisson (D-Loudoun), who sponsored the bill with Del. Robert G. Marshall (R-Prince William), told the state panel that the cost of providing the additional health coverage would be far less than the cost to taxpayers of institutionalizing autistic children who receive insufficient treatment.
"Admittedly, in the near term, mandating this coverage could add slightly to the cost of health insurance in Virginia," he said. "But whatever the cost, and no one can say for certain what it will be, it pales by comparison with what it will be if we fail to invest now in early intervention services."
The panel, the Special Advisory Commission on Mandated Health Insurance Benefits, will make a recommendation to the 2009 General Assembly on passing the bill.
Speaking on behalf of the Virginia Chamber of Commerce, Keith Cheatham expressed concern that the legislation would lead to higher insurance premiums.
Doug Gray, a lobbyist for Virginia health insurance companies, questioned whether therapy treatments for autistic children should be considered medical or educational services.
"ABA is described as an education service by federal law," he said. "Many borderline health-care services are not covered by health insurance. For example, if a kid with [attention-deficit hyperactivity disorder] needs a tutor or a special school, it would be provided by educators."
Poisson, responding to Gray's comment, said that the ABA program "originates with a medical diagnosis, and only an MD can make that determination. ABA is a necessary medical treatment."
Casandra Oldham of Leesburg cried as she told the delegates about her sons Gareth and Korlan, ages 4 and 2, who have been diagnosed with autism.
She said she and her husband, Bill, have seen improvement in their sons through the ABA program but cannot afford to pay for the amount of therapy the boys need. Providing both sons with 40 hours of therapy a week would cost the family nearly $14,000 a month, she said.
"I've been put in a position that no mother should ever be put in," Oldham said. "When I found out that baby Korlan was also autistic, I had to decide: Should I give one more therapy than the other? Or should I give them both equal amounts, but less?"
Having run out of savings, the Oldhams are raising money through yard sales, bake sales and car washing, she said.
Adults on the Autism Spectrum Can Benefit the Work Force
Exceptional Parent Magazine
By Hope Arvanitis
Oct 1, 2008
As people nationwide recognize the merit of observing October as National Disability Employment Awareness Month, more needs to be done to help interested adults with autism spectrum disorders (ASDs) access jobs. ASDs affect 1 in 150 children nationally, and 1 in 94 in New Jersey, which has the nation's highest rate. One premier autism advocacy organization, the New Jersey Center for Outreach and Services for the Autism Community (COSAC), believes that the key to increasing work options for adults with autism centers on awareness and education. The agency's approach is twofold: rally the business community and educate families.
Kevin Petranich works as a full-time Clerical Assistant in the Interoffice and Distribution Services Department at Educational Testing Service (ETS) in Princeton, New Jersey.
The shift from childhood to adulthood can be demanding and complex. When working with families, COSAC stresses the importance of ensuring that children on the autism spectrum have the opportunity to participate in functional, vocational training to gain necessary skills to get a job and live independently. This is vital because most individuals with ASDs require multiple opportunities to learn skills that can lead to success on a job. "We encourage parents and professionals who support school-aged individuals to look toward the future and be sure that students' Individualized Education Programs include the acquisition of essential, marketable skills in the areas of communication, functional academics, socialization, navigation, and appearance," said COSAC Executive Director Linda Meyer, EdD. MPA. "We also teach parents about transition planning, which helps ease the move from school to adulthood for students with ASDs."
A planning goal for some families is entry into the work force, which will need additional workers. New Jersey has experienced slower economic growth; the unemployment rate, which was 4.2 percent in June 2007, is now at 5.3 percent. Despite the recent economic slowdown, the U. S. Bureau of Labor Statistics expects the impending retirement of the baby boomers will reduce the size of the work force and put a greater burden on individuals remaining in the work force, perhaps forcing them to work longer hours. Services may suffer and needs could go unmet unless older workers can be retained or other sources of workers can be found. One source of workers is the population of adults with autism.
"Smart companies with proactive leaders are always looking for the next untapped labor pool; adults with ASDs are an untapped labor pool with untapped potential," said COSAC Public Policy and Systems Advocacy Director, Leslie Long. She consults with supportive employment providers to engender a better understanding of the specific learning styles of adults with ASDs. COSAC also sponsors training and advises state and local committees in efforts to unite employers, potential employees, and professionals. "The primary mission of our department is to continually reinforce the need for public policy that removes barriers and increases opportunities for adults with ASDs to enter the competitive work force," Long said.
"If we can develop a system where we have adequate supports in place for employment for people with autism, we might not only maintain the current size of the work force with good employees, we can add people to the work force, and that's only going to lower labor costs for employers," said Andrew Abere, PhD, a Senior Economist at Princeton Economics Group in Princeton, New Jersey and father of a teenage son with autism. "Employers recognize that they can hire employees with autism and that many are productive, ambitious, dedicated, and responsible - sometimes more so than the non-disabled work force. It also gives the person with autism a sense of dignity and being a part of the community," Abere said.
Adam Zoroni is a part-time Clerical Assistant at Global Associates in Metuchen, New Jersey.
Many adults with autism first experience work options via supported employment, which facilitates competitive work in integrated work settings. This model encourages people to work within their communities and promotes social interaction. One such provider is the Arc of New Jersey's Project HIRE, which assists individuals in choosing a job and provides employment training specialists, or job coaches, who train them to do a good job. "The goal is to match people to a job according to their ability and interest and teach them to eventually perform the job independently," said Project HIRE's Assistant Director, Frank DeLucca. Once training is complete, the coach continues to visit the work site to make sure things are going well. "I've seen adults with autism get a variety of jobs," DeLucca said. "In the few occasions when an employer was initially reluctant, the same employer returned to us a few months later and asked if we had anyone else who would like to join his staff."
COSAC encourages the business community to recognize that providing services and supports for adults with autism on the job can lead to success. Several business leaders concur. "Diversity in the work place, whether it's people with autism, cognitive disabilities, or physical disabilities, adds value to the work force," said Kurt Landgraf, President and CEO of Educational Testing Service (ETS) in Princeton, New Jersey. ETS employs several individuals with disabilities, including Kevin Petranich, who has autism. Kevin is a full-time Clerical Assistant in the Interoffice and Distribution Services Department. He lives with his family in Lawrenceville, New Jersey, commutes to his job via public transportation and has been employed by ETS since 2001. "ETS has been fully supportive of Kevin in terms of outside job coaches and on-the-job natural supports," said Kevin's mother, Kathy Moore. "His supervisors have established a relationship with his job coaches and carved out an individualized system to support him toward his fullest potential. They've paired Kevin up with coworkers, mentors, and friends on the job to help support him. More importantly, they include Kevin as one of the team."
"Businesses have a responsibility to their community to help people who need a little extra advantage to move up," noted Landgraf. "There are all kinds of things to improve employees so, I don't see what the big deal is to have special job coaching for people who need that to improve their productivity. All kinds of people with disabilities add to our work place, not just by making it a more diverse place, but by bringing skills and attitudes that we wouldn't find in another population. It is really a good idea from a business perspective. This is not philanthropy. People with disabilities bring amazing value to the organization. On the whole, they have lower absentee rates. Their sick time rates are much lower, and they take their jobs tremendously seriously."
Thirty-one-year-old Adam Zoroni has autism and Fragile X syndrome. He works as a part-time Clerical Assistant at Global Associates in Metuchen, New Jersey. "Adam is a very cheerful, upbeat individual who became part of the team," said agency president Phil Provenzano. "He knows everybody by name; the employees know his name and look forward to seeing him every day. His work ethic, warm personality, and great sense of humor are real assets." Adam files paperwork under the supervision of his job coach who reports that he makes more frequent eye contact and uses full sentences to engage in conversation with his co-workers. "I like working at Global because it is fun, and I do a great job," Adam said. "I got a paycheck today, and I will put it in my bank account."
A man with autism in his thirties, Steven Greenberg works on a maintenance crew at several central New Jersey Wawa stores. "Steven is capable of contributing to society, not just taking from it," said his father, Norman Greenberg. "I want him to work as much as he can work, do whatever he can to support himself, and support his community. I want him to do that, and I think the community wants him to do that."
"Many adults on the spectrum can and want to contribute to the economy through a valued role in the competitive work force," Long posited. "The global economy and advanced technology present a unique opportunity to look at the work force in a broader way. Companies know that to remain successful, they need to invest in diverse human capital such as adults with autism. In addition to the skills adults with ASDs offer as employees, they represent the face of the current and future customer-driven market. There is no denying that people with disabilities and their families support companies that understand and appreciate the disability community."
Increasing employment options of adults with ASDs includes educating employers, families, and the general community about where the job supports are, what unique skills individuals with ASDs possess, and what the future job market looks like. COSAC will publish a guide to employment in New Jersey for individuals on the autism spectrum. The guide will be accessible on COSAC's website ( www.njcosac.org ) and available by calling COSAC at 609-883-8100, extension 48. "This publication represents an educational tool for anyone interested in supporting job development for an individual on the spectrum," Long said.
"I'll tell you what I tell other employers," Landgraf said. "I want nothing more or less from employees with disabilities than I want from every other employee. I want productivity. I want them to pay attention to their job, and I want them to have the opportunity to reach their potential in a safe work place."
Professional psychologist, Dr. Daniel Gottlieb, is the host of National Public Radio's Voices in the Family program and grandfather to Sam, a young child with autism. He hopes that employment options for people with disabilities will have significantly improved by the time Sam becomes an adult. "I'm hoping there will be more jobs for Sam, more than are available to today's adults with autism," Gottlieb said. "I hope employers will understand these people's humanity, their skills, and the gifts they bring."
National Disability Employment Awareness Month 2008
"America's People... America's Talent... America's Strength!"
What is National Disability Employment Awareness Month?
Congress designated each October as National Disability Employment Awareness Month (NDEAM).
This effort to educate the American public about issues related to disability and employment actually began in 1945, when Congress enacted a law declaring the first week in October each year "National Employ the Physically Handicapped Week." In 1962, the word "physically" was removed to acknowledge the employment needs and contributions of individuals with all types of disabilities. In 1988, Congress expanded the week to a month and changed the name to "National Disability Employment Awareness Month."
Congress passes bill to protect disabled
By Thomas Ferraro
WASHINGTON (Reuters) - The often divided, election-year Congress came together on Wednesday to give final approval to a bill to protect millions of disabled Americans against discrimination in the workplace.
On a voice vote, the House of Representatives approved the measure that was unanimously passed by the Senate last week. The White House said President George W. Bush would sign it into law.
The legislation would reverse U.S. Supreme Court rulings that critics charge narrowed the intent of the 1990 Americans with Disabilities Act (ADA) and erected new barriers to coverage. The 1990 law was signed by Bush's father, then President George Bush.
"The Americans with Disabilities Act of 1990 is instrumental in allowing individuals with disabilities to fully participate in our economy and society, and the administration supports efforts to enhance its protections," said White House press secretary Dana Perino.
The measure clarifies that Congress intends the Americans with Disabilities Act to be broadly interpreted in requiring employers to make accommodations for the disabled.
It reverses Supreme Court decisions that limited the law. The court ruled, for instance, that mitigating circumstances like medication or a prosthesis make a person ineligible for coverage.
The bill again defines a disability as a physical or mental impairment that "substantially limits" activities. It also increases the number of activities covered and expands the ability of workers to sue if they believe they are mistreated.
Advocates for the disabled and the business lobby compromised in helping draft the bill, ensuring broad support among Democratic and Republican lawmakers even as they jockeyed ahead of the November 4 congressional elections.
House Democratic Leader Steny Hoyer said backers of the initial law "never expected that people with disabilities who worked to mitigate their conditions would have their efforts held against them. But the courts did exactly that."
"We are here today to bring those millions of our fellow citizens back where they belong: under the protection of the ADA," Hoyer said.
Camille Olson, a Chicago attorney who represented employers in the drive to craft the bill, said the measure is the result of "the business community and disability advocates coming together to work toward the common goal of meeting the needs of employees without compromising the competitiveness of America's businesses."
Nancy Zirkin of The Leadership Conference on Civil Rights, said, "It's unusual that business and social justice advocates can hammer out their legislative differences ... but that is exactly what has happened."
(Editing by David Wiessler and Alan Elsner)
The National Institute of Mental Health Opts to Not Study Chelation
Cancellation of Controversial Autism Study Causes Both Relief and Outrage
A federal health agency has dropped plans for a controversial autism study, pleasing many scientists but disappointing some families with autistic children. The study would have tested a treatment called chelation, which removes heavy metals from the body and is used to treat lead poisoning. Its use as an autism treatment is based on the fringe theory that mercury in vaccines triggers autism - a theory never proved and rejected by mainstream science. Mercury hasn't been in childhood vaccines since 2001, except for certain flu shots.
Cancellation of controversial autism study causes both relief and outrage
NJ to Establish an Autism Awareness Training Course for Emergency Medical Technicians, Firefighters and Police Officers
Members of the New Jersey Center for Outreach and Services for the Autism Community (COSAC) were present at the State House yesterday as Governor Jon Corzine signed a bill requiring the Departments of Health and Senior Services (DHSS) and Human Services (DHS) to develop an autism, intellectual and developmental disability course and curriculum for first responders, including emergency medical technicians, police officers and firefighters. COSAC is the state's sole autism advocacy agency, which is committed to assisting families, individuals and agencies concerned with the welfare and education of children and adults with autism spectrum disorders.
"Through its policy and government relations efforts, COSAC played an integral role in the drafting and passage of this important legislation for families," said COSAC Executive Director Linda Meyer, Ed.D., MPA. "We were pleased to be there as the Governor signed this bill into law, and COSAC will continue to advocate for the rights of individuals on the autism spectrum."
Meyer was accompanied at the State House by COSAC Public Policy and Systems Advocacy Director Leslie Long, COSAC Board member Barbara Strate, who addressed the crowd, and her daughter Sarah, who has autism. "Nothing is more important to me than the safety of my child," Strate said. "This bill will ensure that we equip our responders with the specialized training they need to do their jobs and keep our loved ones safe." New Jersey has the nation's highest autism rates, with 1 in 94 children diagnosed with an autism spectrum disorder; the national rate is 1 in 150.
The Commissioner of Health and Senior Services and the Commissioner of Human Services, in consultation with the New Jersey Fire and Emergency Medical Services Institute and the New Jersey State First Aid Council, will develop a training curriculum with the purpose of informing emergency responders of the risks associated with autism and other developmental disabilities, as well as providing instruction in appropriate recognition and response techniques concerning individuals with these disabilities. The curriculum is to be incorporated into existing time requirements for training and continuing education of emergency responders.
"Training first responders to meet the needs of a person with autism has become an acknowledged need across the country," Governor Corzine said. "Autism is an invisible disability, one that is not always immediately recognized. That's why it's important that we supply our emergency responders with accurate information on how to treat and work with these individuals with special needs."
Primary sponsors of the legislation in the Assembly were Assembly Speaker Joseph J. Roberts, Jr. (D-Camden) and Assemblymen Frederick Scalera (D-Essex) and Paul D. Moriarity (D-Camden, Gloucester). Sponsors in the Senate included Senators Loretta Weinberg (D-Bergen) and Robert M. Gordon (D-Bergen). "In an emergency situation, every second counts and the knowledge that a person suffers from autism can mean the difference between life and death," Weinberg said. Under the law, new EMTs, volunteers and paid firefighters and local police officer recruits are required to complete the training as a condition of certification. EMTs, firefighters and police officers currently licensed in New Jersey are now required to complete the training as a continuing education course within three years of the bill's enactment date. "Governor Corzine is keeping New Jersey squarely at the forefront of the national effort to clear roadblocks and raise awareness so individuals with autism can become independent and successful members of society," said Assembly Speaker Joe Roberts, Jr.
September 2008
CDC Study Claims There is No Link Between the MMR Vaccine and Autism
A Centers for Disease Control and Prevention (CDC) study released today claims there is no link between the MMR vaccine and autism. The National Autism Association (NAA) says this study does nothing to dispel the growing public concern over a vaccine-autism connection and raises several questions concerning design and methodology.
For years, parents have claimed that MMR triggered their child's subsequent GI (gastrointestinal) disease and autism. In a 2002 paper where the majority of autistic children were found to have measles in their intestines, the children examined showed a clear temporal link between MMR exposure and regression. The CDC's attempt to replicate the 2002 study fell far short of proving the safety of the MMR vaccine.
1. The CDC study was designed to detect persistent measles virus in autistic children with GI problems. The assumption being if there is no measles virus at the long delayed time of biopsy, there is no link between autism and MMR. But NAA says this underlying assumption is wrong. The questions should have been: Do normally developing children meeting all milestones have an MMR shot, develop GI problems and then regress into autism? Do they have evidence of measles and disease in their colons compared to non-vaccinated age and sex matched controls?
2. In the current CDC study, only a small subgroup of children was the correct phenotype to study. From page 7, "Only 5 of 25 subjects (20%) had received MMR before the onset of GI complaints and had also had onset of GI episodes before the onset of AUT (P=0.03)." The other 20 autistic children in the study had GI problems but the pathology developed before the MMR vaccine. Additionally, the controls all received the MMR vaccine and had gastrointestinal symptoms. The controls should have been free of exposure to vaccine measles in order to make a comparison relevant for purposes of causation.
3. Inflammatory bowel disease in the absence of MMR RNA does not mean that MMR shot didn't precipitate the GI disease and didn't precipitate autism. A similar example would be rheumatic fever where the infection is cleared quickly but damage to the heart and/or brain last a lifetime.
Public confidence in the safety of vaccines is at risk until safety studies are performed that are required by law, ethics, and science. NAA calls for a vaccinated vs. non-vaccinated study comparing all health outcomes including autism. The CDC is in charge of vaccine safety, owns patents to vaccines (according to a UPI Investigative Report from 2003) and is in charge of promoting vaccines. The public should demand that vaccine safety be taken away from an agency with such conflicts and support HR#1973, the Vaccine Safety and Public Confidence Assurance Act."
NJ Governor's Adults with Autism Task Force Rescheduled for September 24
The next meeting of the NJ Governor's Adults with Autism Task Force will be held September 24, 9:30 am to 3:30 pm at The John J. Heldrich Center for Workforce Development, 30 Livingston Avenue, New Brunswick, NJ 08901. Meetings are open to the public. For more information on the Task Force and its appointed members, click here and navigate down the page to the listing for "New Jersey Adults with Autism Task Force." For more information, please call 732.932.4100 or e-mail Julie Caliwan at julie.caliwan@dhs.state.nj.us
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Syndicated Talk Show Host's Remarks Offend the Autism Community
In remarks during his nationally syndicated radio talk show, The Savage Nation, WOR AM Radio host Michael Savage characterized nearly every child with autism as "a brat who hasn't been told to cut the act out" and stated that "99 percent of children diagnosed with autism are "morons." On the July 16 installment of his program, which is broadcast every weekday from a San Diego, California studio, Savage suggested that "99 percent of the cases" of autism were a result of lax parenting. He told his audience: "They don't have a father around to tell them, 'Don't act like a moron. You'll get nowhere in life."
Savage told the New York Times yesterday that he had no intention of apologizing to those advocates and parents who have called for his firing. "My main point remains true," Savage said. "It is an over-diagnosed medical condition." He also added that his words were taken out of context and that he actually was making a commentary on a "greedy, corrupt" pharmaceutical industry.
Savage stated that he was trying to "boldly awaken" parents to his view that many people are being wrongly diagnosed and that he was proud to have precipitated discussion on the subject.
In his program last Wednesday, Savage stated,"What do you mean they scream and they're silent?" They don't have a father around to tell them, "Don't act like a moron. You'll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don't sit there crying and screaming, you idiot."
The government estimated that 1 in 150 children have some form of autism. But many experts believe these unsociable behaviors were just as common 30 or 40 years ago and that the increase is mostly caused by a surge in special education services and a corresponding shift in diagnosis.
Parents rallied across the country yesterday calling for Savage's termination from his job. Evelyn Ain, whose 8-year-old son has been diagnosed with autism, said she had never heard of Savage and couldn't believe what she had heard when she first listened to the remarks. She organized a demonstration outside WOR-AM, which broadcasts Savage. "That isn't just freedom of speech, it's hateful speech when you say 99 percent of children with autism are brats," she said. "I'll tell you, I wish I had a brat."
"All degrees of autism stem from a neurological illness that people have no control over," said Joanne Gerenser, executive director of Eden II programs.
"One important goal of increasing awareness about autism is to foster a greater level of acceptance understanding of the very real and significant challenges it poses to individuals with the disorder and their families," said Autism Speaks executive vice president Peter Bell. "The good news is that we see more and more expressions of this compassion every day and everywhere, from classrooms and playgrounds to ballparks and supermarkets. Unfortunately, there are those who are apparently incapable of feeling compassion. They deserve out pity, not our scorn." Bell said he is not aware of any big controversy about an over-diagnosis of autism. He said Savage's remarks, effectively blaming parents, reflect an outdated point of view. "He's an entertainer, he does these things for attention," Bell said. "I think we should, to the best we can, ignore it."
Wendy Fournier of the National Autism Association, a parents' advocacy group, called Savage's comments "way, way, way over the line and cruel." Catherine Lord, an expert on autism who is a visiting professor in the child study center at New York University, said that beneath Mr. Savage's overheated rhetoric was a kernel of truth: that some children are saddled with an autism diagnosis by default, when they seem to fit in no other category. But far more often, she said, children who have autism are given a misdiagnosis of having something else. And she said she feared that Savage's ill-informed comments could wind up being harmful. "Any tendency to blame the children or to think they are just being bratty if they misbehave perpetuates the myth that autism isn't a learning disability, "she said. "It's a neurobiological condition, just like epilepsy or another medical condition like diabetes or a heart condition. It would be like blaming the child with a heart condition for not being able to exercise."
"I'm hoping to make him see the reality of what these kids are facing," Lord said. "You can't fix it by telling a kid to shut up. It's like telling a kid with cancer to stop being sick."
"Occasionally, an uninformed opinion arises that makes us realize how much work there is yet to be done," said COSAC executive director Dr. Linda Meyer, "Michael Savage's remarks were ill-informed to say the least, and most likely in an effort to gain publicity. Yet, one has to wonder how he thought it was appropriate to make such claims about parents' and children's abilities, especially as a sibling of someone with a disability. Perhaps the two messages he wanted to covey (his opinion of overdiagnosis and the perceived danger of a "cartel of doctors and drug companies") became muddled," Meyer said.
August 2008
COSAC Executive Director Appointed to Governor's Council for Medical Research and Treatment of Autism
Dr. Linda Meyer was appointed on August 21 to the New Jersey Governor's Council for Medical Research and Treatment of Autism. The Council was created by state statue in 1999. It was to receive a one year appropriation, which was continued in subsequent years. In 2003 the Council received a consistent funding source with the passage of legislation allocating to the Council $1 of every moving violation issued in New Jersey. This has resulted in an annual fund of approximately $4 million for insurance by the Council to grant recipients conducting basic science and clinical research into the causes of and treatment for autism. Initially, the Council was made part of UMDNJ. In 2007, new legislation was passed revising the composition of the Council and moving it to the NJ Department of Health and Senior Services.
Watch COSAC staff discuss healthcare issues on FOX TV's "New Jersey Now"
Director of Public Policy at the NJ Center for Outreach & Services for the Autism Community, COSAC and Gregg Edwards, President of the Center for Policy Research of NJ discuss pending healthcare coverage legislation on FOX TV's New Jersey Now. Click here to watch the segment.
July 2008
Library Customer Services Staff Autism Training Video Now Available
The Scotch Plains Public Library and the Fanwood Memorial Library, together with our partners, produced a customer service training video primarily for library staff to help them serve individuals with autism and their families more effectively. The video focuses on what you need to know about autism and will empower you with specific techniques to offer more inclusive service to this growing and underserved population. Click here to view the training video.
May 2008
Assembly Committee Clears Bill To Create an Advocate for Autistic New Jerseyans
ASSEMBLY DEMOCRATS
NEWS RELEASE
www.assemblydems.com
FOR RELEASE: CONTACT:
May 5, 2008 Alescia Teel
(609) 292-7065
Assembly Committee Clears Bill To Create an Adovate for Autistic New Jerseyans
Part of Second Wave of Autism Support Measures Would Establish the Office of the Advocate for Persons with Autism
(TRENTON) - The Assembly Health and Senior Services Committee today released legislation Assembly members Joan Voss, Vincent Prieto and Assembly Speaker Joseph J. Roberts, Jr. sponsored to establish an Office of the Advocate for Persons with Autism (OAPA).
The measure is part of the second wave of landmark autism support measures introduced in February that complement the historic seven-bill autism awareness package Assembly Speaker Roberts championed into law last session.
"We must continue to clear the way to enable families to better face autism by pairing them with the educational, health, and support services that they desperately need," said Roberts (D-Camden). "Our efforts can drastically improve the quality of life for families living with autism while promoting better understanding and support for residents facing this complex disorder."
"We must give a voice to the thousands of families of autistic New Jerseyans who are not always aware of the services available to them," said Voss (D-Essex), whose son has been diagnosed with Asperger's Syndrome, a form of autism. "This advocate will help to better protect the rights of the growing autistic community and ensure that families and loved ones do not face this baffling disorder alone."
The measure (A-2256) would establish an advocate for autistic New Jerseyans within the state Division of Advocacy for the Developmentally Disabled in the Department of the Public Advocate.
"By establishing an advocate dedicated to the concerns of the autistic community, New Jersey would be making the well-being of its autistic residents a top priority," said Prieto (D-Hudson). "Our efforts could help families struggling to care for a loved one with autism find services to vastly improve the quality of their lives. We must continue to proactively reach out and help New Jersey families struggling to tackle this complex disorder."
Among its responsibilities, the OAPA office would:
- Provide leadership within the autism community in New Jersey;
- Work with the Division of Developmental Disabilities in the Department of Human Services to promote policies that support the integration of autistic residents into the community;
- Assist families that have a loved one with autism streamline needed services provided by multiple agencies of government;
- Promote greater awareness and education among the general public concerning the characteristics and needs of individuals with autism;
- Assist in the development of support networks for families with a loved one with autism through public and private entities; and
- Work with the business community to facilitate the accommodation of individuals with autism and their families in public places. The committee released the measure by a vote of 10 to 0. It now heads to the Assembly Speaker who decides when and if to post it for a floor vote.
April 2008
COSAC Supports The Helping Hands Autism Act of 2008, New Autism Legislation Announced Today by U.S. Senator Robert Menendez
Ewing, NJ: Members of the New Jersey Center for Outreach and Services for the Autism Community (COSAC) attended a press conference today and applauded U.S. Senator Robert Menendez's (D-NJ) announcement of a new plan to support families affected by autism spectrum disorders (ASDs). The Helping Hands Autism Act of 2008 aims to increase Housing, Awareness and Navigation Demonstration Services (HANDS) for individuals with ASDs. It is expected to combine guidance for families seeking ASD services and care, awareness training for first responders and a task force on housing for adults with autism. New Jersey, where 1 in 94 children is diagnosed with an ASD, has the highest rate of autism in the nation. Today's event was held at the Theodore Roosevelt No. 5 Elementary School in Weehawken, NJ, and follows several pieces of autism legislation introduced in the past year.
COSAC Executive Director Linda Meyer and Director of Public Policy and Systems Advocacy Leslie Long attended today's event along with families affected by ASDs, and representatives of Autism Speaks, a national organization. Several people addressed the positive impact this legislation can have on more than 87,000 state residents affected by an ASD.
COSAC thanked Senator Menendez for listening to the needs of New Jersey's autism community and acknowledging COSAC as a valuable resource for families and professionals who support them. "The Helping Hands for Autism Act marks a great step toward an improved quality of life for individuals affected by autism spectrum disorders," said Linda Meyer. "The autism community represents both a medical and financial challenge for our communities. As the state's budget tightens, states need to look for federal partners to help solve difficult problems. Senator Menendez, thank you for working to create a long overdue federal and state partnership to benefit the autism community," Meyer concluded.
"Nothing is more important to families than to know that their government understands the issues they are facing and to present solutions to aid them," said Leslie Long, whose department educates families, legislators, employers and the community on the lifelong needs of individuals affected by ASDs. "We believe that Senator Menendez has empowered the autism community through this much needed and very important legislation."
Human Services Sued on Behalf of 8,000 Disabled People
by Susan K. Livio/The Star-Ledger
Wednesday April 16, 2008, 12:59 PM
A legal advocacy group and a prominent law firm filed a lawsuit against the Department of Human Services on behalf of 8,000 developmentally disabled people, saying their rights have been violated because they have been waiting - many for years - to move into government-sponsored community housing.
The federal lawsuit targets the state for failing to meet its legal responsibility to provide housing for people who want or need to live outside of their family homes. The Department has established a waiting list, but few ever leave it, unless a parent or other caretaker becomes ill or dies, the lawsuit said.
"These individuals have been for years diverted to a so-called 'waitlist' for such services, with no guarantee, and little hope, of accessing the services they need," said R. Scott Thompson of Lowenstein Sandler, which is representing the federally funded legal rights group New Jersey Protection and Advocacy Inc. for free.
"The failure of the state to provide community services for thousands of individuals has had a devastating effect,'' said Emmett Dwyer, NJP&A's Director of Litigation. "Thousands of people are stuck at home going nowhere, and many of them have been unnecessarily placed in institutions when their elder parents could no longer care for them.''
A state spokeswoman for the department could not immediately be reached for comment.
This would be the fourth lawsuit filed against the state Department of Human Services by advocacy groups trying to compel the state to expand or improve its services to vulnerable people.
New Jersey Protection and Advocacy has two lawsuits pending against the department - one on behalf of people with mental illness, the other for developmentally disabled people - who have the will and capability to live outside state institutions but remain there because of a lack of housing options and services. Children's Rights, a national advocacy group based in New York, sued the department in 1999 on behalf of foster children as a means to force the state to invest more money and improve the child welfare system. That lawsuit was settled in 2003 and court-monitored overhaul of children's services is ongoing.
Local Events Across New Jersey Will Mark Autism Awareness Month -- DHSS Initiatives Aimed at Helping Families Cope with ASDs
The New Jersey Department of Health and Senior Services (DHSS) joins organizations throughout New Jersey in promoting greater understanding of autism on World Autism Awareness Day, Wednesday, April 2, and throughout April, which is National Autism Awareness Month.
An Autism Spectrum Disorder (ASD) is a developmental disability that begins before age three and lasts throughout a person's life. ASDs significantly weaken the ability to communicate and interact with others. No two people with an ASD have the same symptoms, and the ability to think and learn varies from gifted to severely challenged. What people with ASD have in common are unusual ways of learning, paying attention or reacting to sensations. ASDs occur in all racial, ethnic and socioeconomic groups, and are four times more likely to occur in boys than in girls.
"A diagnosis of autism can have profound effect on a family," said Health and Senior Services Commissioner Heather Howard, "that is why it's so important for parents and caregivers to be aware of normal developmental milestones. Once a delay is suspected, early evaluation and intervention will help families to better cope and meet the developmental and health-related needs of their child."
According to data recently released by the Centers for Disease Control and Prevention (CDC), one in every 94 children in New Jersey has autism, which is the highest rate among the states examined by the CDC in the most comprehensive study of prevalence of autism to date.
Last September New Jersey Governor Jon S. Corzine signed a package of seven bills relating to autism spectrum disorders.
One of these bills established the DHSS Early Intervention Program to address the specific needs of children with autism spectrum disorders and their families. These activities involve developing guidelines for healthcare professionals to use in evaluating infants and toddlers for autism, ensuring the timely referral by health care professionals of infants and toddlers suspected of being on the autism spectrum to the Early Intervention Program and collecting data on statewide autism screening, diagnosis, and intervention programs and systems. DHSS partners include the New Jersey chapter of the American Academy of Pediatrics; Autism Speaks; the Statewide Parent Advocacy Network, Inc.; the New Jersey Center for Outreach and Services for the Autism Community, along with academic institutions and healthcare organizations
Another bill transferred the Governor's Council for Medical Research and Treatment of Autism from the University of Medicine and Dentistry of New Jersey to the DHSS Division of Family Health. The Council is charged with awarding grants and contracts for research, diagnosis and treatment services for autism. Currently, 11 autism research projects in New Jersey are funded through the Council. Grant funding is also anticipated in July 2008 to establish and enhance services at several sites in New Jersey for children and families affected by autism.
The Governor also signed legislation requiring DHSS, in consultation with the New Jersey Department of Human Services, to maintain an up-to-date registry to include a record of all reported cases of autism that occur in New Jersey; each reported case of autism in which the initial diagnosis is changed, lost, or considered misdiagnosed; and any other information DHSS deems relevant and appropriate to conduct thorough and complete epidemiologic surveys of autism, to enable analysis of this problem, and to plan for and provide services to children with autism and their families.
For more information about autism, visit the CDC Autism Information Center at http://www.cdc.gov/ncbddd/autism/cdc/index.htm. Public awareness campaigns for World Autism Awareness Day and Autism Awareness Month are being held in New Jersey to help everyone better understand the scope of this health crisis and the need for compassion and acceptance for those living with autism.
March 2008
Martial Arts with Hearts Raises $72,000 for COSAC
Six-year-old Julia Feldman knew the importance of where she was going Sunday evening way before she set foot on the grounds of Brookdale Community College. Julia's father, Howard, of Freehold told his family in advance that the United Taekwondo Academies' fourth annual Martial Arts with Hearts extravaganza was more than just seeing people kicking and punching; it was a community effort to raise money for youngsters afflicted with autism.
"It's to help children do things that they need," said Julia, donning a martial arts outfit and hugging her father. Julia, along with two other siblings, have been martial arts students for about seven months.
"It's these types of events that really make an impact on young people like Julia, and hopefully, that impact carries over later in life and they learn generosity from a very young age," Feldman said.
Martial artists of all ages performed high-flying jumps, board-breaking and a host of other martial arts skills at a fundraising event, which drew families from various parts of the state. An estimated $72,000 was raised and presented to the Center for Outreach and Services for the Autism Community (COSAC). Sunday's fundraising efforts began a year ago, and 100 percent of the proceeds will go toward autism awareness and research.
"I think it's important that we teach not only kicking and punching to the children," said Michael Crocco, co-founder of United Taekwondo Academies, a regional chain comprised of five martial arts schools in Matawan, Jackson, Manalapan, Hamilton and Union. "It's about giving back to the community and doing a service and making sure that they understand that martial arts isn't necessarily just about fighting and self defense; it's about the community giving back. Every person can make a difference in the community. If you band together, there are no limitations to what you can do."
UTA, founded in 1987, teaches beginner through advanced Taekwondo intertwined with lessons of integrity, perseverance, self control, community service and volunteerism. Efforts to raise funds for research and supporting families with childhood illness started in 2003 through its sub organization, Martial Arts with Hearts.
Timothy Toomey, 13, of Old Bridge is a member of the United Taekwondo Academies chapter in Matawan. He earned his black belt last summer after six hours hours of what he called a "grueling physical test." For Toomey, being a part of the event was personal. At age 6, he was diagnosed with Asperger syndrome, a neurobiological disorder that is part of a group of diagnoses called autistic spectrum disorders. Named after Viennese physician Hans Asperger, individuals with the illness show marked deficiencies in social and communication skills. The exact cause of the syndrome is unknown.
"It's nice to know that so many people care about something afflicting kids even if they have no idea what it's about," Toomey said. "Without martial arts, I wouldn't be able to communicate with people to the extent that I am."
Toomey's mother, Leila, called the event heartwarming and significant because "it's special for people who deal with the challenge of autism to see how many people care."
For John Gallagher, 9, of Jackson, being a martial arts student for the past four years has been a "cool" learning experience and a fun way to meet people.
"I really feel proud that I am doing all this stuff to help people," Gallagher said. "I like raising money for other people."
Asked what being a part of a worthy cause means, Jackson resident Rob Zangrillo, 17, said, "You have to give up yourself before you can expect anything returned to you."
Scalera Bill to Promote Autism Awareness Among First Responders Advances
(TRENTON) - The Assembly Health and Senior Services Committee released legislation Assemblyman Fred Scalera sponsored to establish an autism awareness training course for emergency medical technicians, police and firefighters.
"Although New Jersey is a national leader in providing care and support for those with autism, it is essential that our first-responder network is sufficiently trained to recognize autism and how to handle individuals who have this disorder," said Assemblyman Scalera (D-Essex), who is a Nutley deputy fire chief.
The measure (A-1908) would require the Department of Health and Senior Services (DHSS) to create an autism awareness training course and curriculum. Prior to being certified, prospective emergency medical technicians would be required to complete the DHSS administered course. Individuals currently certified as emergency medical technicians would be required to complete a continuing education course in autism recognition and response techniques.
"New Jersey's police officers and firefighters need the tools and training to understand and help individuals with autism," said Scalera. "This autism awareness program will make police officers and firefighters better professionals."
Additionally, the legislation would require the Division of Fire Safety and the Police Training Commission to utilize the DHSS training course curriculum to properly train firefighting and police recruits in autism awareness, recognition and response.
Currently employed police officers and firefighters - paid and volunteer - would be required to complete a continuing education course in autism recognition and response.
The legislation is the final piece of the landmark autism package championed by Assembly Speaker Joseph J. Roberts, Jr. (D-Camden) to strengthen New Jersey's efforts in the detection, treatment and awareness of autism. The initiative was launched in February 2007 following the release of the Centers for Disease Control and Prevention report that identified New Jersey as having the nation's highest reported rate of autism - one out of 94 children. Six measures from the seven-bill package already have been signed into law.
The Assembly panel released the measure 11 to 0. It now heads to the Assembly Speaker, who decides if and when to post it for a floor vote.
Genetic Variation Increases Risk of Autism, Study Finds
There is a known genetic cause for about only 10 percent of individuals with autism. Boston-area researchers estimate the gene glitch they have identified accounts for an additional 1 percent. They found that a segment of a chromosome that has genes linked to brain development and various developmental disorders was either missing or duplicated far more often in people with autism. The defect was sometimes inherited but more often was the result of a random genetic accident. The results from the Autism Consortium study, released on January 10 by the New England Journal of Medicine, confirm those of smaller studies by U.S. and Canadian research groups in the last year.
"We've provided very compelling evidence that this particular small stretch of the genome provides an important clue to the biological roots of autism," said lead researcher Mark J. Daly, an assistant genetics professor at Harvard Medical School and an investigator for the consortium, which includes researchers from 14 Boston-area universities and medical centers.
Another study researcher, David Miller of Children's Hospital Boston, said the Chromosome 16 variations increased the risk of autism a hundredfold. But he said the disorder must be due to a combination of genetic variations since there were people who had the defect but did not have autism. The researchers found a 25-gene segment of Chromosome 16 was missing in five children with autism; none of their parents had the deletion. That shows that sometimes the genetic glitch is not inherited from the parents, but instead due to a random accident while an egg or sperm is being formed.
Burden of Proof Due Process Hearings Passed by the Senate and awaiting the Governor's Signature. Congratulations Advocates!
SWEENEY / DORIA MEASURE TO RETURN BURDEN OF PROOF IN SPECIAL EDUCATION COURT CASES TO SCHOOLS CLEARS SENATE
TRENTON -- A measure sponsored by Senator Steve Sweeney which would return the burden of proof in special education cases to school districts was unanimously approved by the full Senate.
"It only makes sense to require school districts to bear the burden of proof in these disputes because they have access to detailed educational records and resources that outline the needs for special education curricula, as well as knowledge of federal and state laws regarding special education," said Senator Sweeney, D-Gloucester, Cumberland and Salem. "This is not a new issue here in New Jersey. Over the years, the Supreme Court has heard a number of similar cases and most recently, it has deemed that most parents have neither the financial means, nor the detailed knowledge of special education issues."
Senator Sweeney's measure, S2604, would require school districts to bear the burden of proof in legal disputes against parents of special education students. Often the disputes occur because parents and schools cannot agree on a child's Individual Education Plan (IEP), which requires input from parents and teachers. IEPs help to determine class placement and the necessity for special educational services, said Senator Sweeney.
More often that not, parents have a limited knowledge of the legal system and special education issues. Requiring them to bear the burden of proof in cases with their children places these parents at an automatic disadvantage," said Senator Sweeney.
In the 1989 case of Lascari v. the Ramapo Hills Board of Education, the State Supreme Court decided that the burden of proof in special education disputes should lie with the school district. It was decided that parents should be responsible for questioning the appropriateness of the IEP, but that the district should bear the burden of proof, said Senator Sweeney.
In the 2006 case if Schaffer v. Weast, the U.S. Supreme Court decided that the burden of proof should rest with the party seeking relief -- whether it is the school district or a parent. This decision, however, did not contain language allowing States that had statutes assigning the burden of proof to a particular party to override the Supreme Court decision, Senator Sweeney said.
The State Public Advocate researched the issue, and recommended that school districts always bear the burden of proof in these disputes, said Senator Sweeney.
Currently, ten states and the District of Columbia have statutorily placed the burden of proof on school districts.
The legislation now heads to Governor Corzine's desk, where his signature will make it State law.
February 2008
COSAC Participates in Autism Legislation Hearing
Yesterday, members of COSAC staff testified during the Assembly Committee on Health and Senior Services, at which the second round of autism legislation was proposed and approved.
Click below to see COSAC Director of Clinical Services Suzanne Buchanan testify in support of a bill to require insurance coverage for treatment including Applied Behavior Analysis (ABA).
To view a news story that aired on New Jersey Network News (PBS), visit
www.njn.net/television/webcast/njnnewsmonday.html
Autism legislation report is approximately 10 minutes into the newscast.
Autism Aid is Back on the Table
As posted on February 21, 2008 by the Record of Bergen County:
New Jerseyans with autism would gain a government advocate, insurance coverage for promising treatments and help with living arrangements under a second wave of legislation detailed Wednesday. In all, Assembly leaders say, they will propose six bills to support adults and children diagnosed with the neurological disorder. A similar effort in 2007 resulted in an eight-bill package -- signed by Governor Corzine -- that added millions of dollars for research, among other initiatives. "This is Round 2, building on what we did last year," Assembly Speaker Joseph Roberts, D-Camden, a sponsor of both bill packages, told The Record. "We really have to have a multidimensional approach to how we tackle it." The bills will be considered Monday during a meeting of the Assembly Health Committee in Trenton.
Roberts did not have an estimate of what the latest legislation could cost. But he noted that some proposals -- particularly one to encourage home placement over institutional care -- would involve shifting expenditures among existing programs. And health plans, not taxpayers, would be required to reimburse the cost of expensive behavioral and other therapies that some insurers now decline to cover. "I think [Roberts] introduced some really good pieces of legislation," said Leslie Long, director of public policy for the New Jersey chapter of the Center for Outreach and Services for the Autism Community. "It sends a message to families that the state is listening ... and willing to take a step forward. We need to take a leap, though." New Jersey has the country's highest rate of autism, with one in 94 children affected, according to a study released last year by the federal Centers for Disease Control and Prevention. The national rate is one in 150 children. Autism can include impaired communication skills, social awkwardness and repetitive behavior. It has no known cause or cure.
The Legislature and Corzine have identified autism as a prime concern. In September, the governor approved the state's most comprehensive autism-related legislation ever, including establishing a council for adults, mandating childhood screening and dedicating millions of dollars to research. Some of the legislation described Wednesday is based on existing services. The Office of the Advocate for Persons with Autism, for instance, would be created within the Department of the Public Advocate, whose divisions work on issues important to consumers, voters, senior citizens, those with mental illness and others. One bill would encourage people with autism to find their own living arrangements, with supervision. The idea is to decrease the number waiting for placement in state-run residences, and it resembles the state's "aging in place" initiatives dating to the mid-1990s. The bill to require insurance coverage for therapies is similar to the mental-health parity requirement, enacted in 1999. The three other pieces of legislation would create identification cards, establish a Web site as a clearinghouse for all autism-related services available in New Jersey and set up a student peer program in Grades 7-12, for typical students to interact with those who have autism. Use of the ID cards would be voluntary. Some people with the diagnosis are sensitive to light and sound and they may not comply with a police officer's order to freeze or a firefighter's request to evacuate. In such a situation, an ID card could convey that the bearer may act atypically, but is not a danger. Long, of the autism center, said the Web site and other forms of outreach are sorely needed. Families and people with autism "need to be able to pick up the phone and find out where they get help," Long said.
January 2008
Governor Signs Historic School Funding Reform Initiative
PRINCETON - Governor Jon S. Corzine today signed the School Funding Reform Act of 2008, establishing for the first time in a decade a new system of funding for public school districts throughout New Jersey.
"This historic legislation that I am signing today provides a significant shift away from the ad-hoc, patchwork system of state aid that has been used for years to fund our schools," said Governor Corzine. "I am proud that with this new law, we are finally putting the needs of all children on an equal footing by replacing a flawed system with this equitable, balanced and non-partisan formula. Our children, regardless of where they live, will now have the educational resources they truly deserve in order to succeed."
The new formula builds upon the state's existing high quality educational system which tops the nation in per-pupil spending. Under the new formula, approximately $7.8 billion will be distributed for K-12 education for the FY2009 fiscal year, an increase of approximately $550 million. All districts will receive a state aid increase of at least 2 percent during the first year, and no districts will see a decrease in total state aid during the first three years of the program. Decreases in aid in later years would only occur if districts experience significant declines in overall enrollment or in enrollment categories.
Furthermore, the School Funding Reform Act of 2008 calls for an expansion of high quality preschool for all at-risk students across the state. This initiative will be phased in over six years and will lead to improvements in educational outcomes and economic benefits.
"The Governor should be applauded for the time and energy that went into developing an equitable school funding plan that addresses the individual needs of New Jersey students. It's time that we had a 21st century formula to address 21st century needs," said Senate President Richard J. Codey (D-Essex).
"New Jersey is filling a policy void that has been allowed to languish for far too long," said Assembly Speaker Joseph J. Roberts, Jr. (D-Camden). "Our schools and taxpayers deserve the certainty in funding that only a constitutional and equitable formula can provide."
"We finally have a funding formula that treats every district fairly and breaks down the arbitrary walls separating Abbott and non-Abbott school districts," said Senator Barbara Buono (D-Middlesex). "This is only the first step in making sure every child receives a high quality education, no matter where he or she lives."
The work on developing a formula began more than half a decade ago, and the legislation is the result of intensive work by Department of Education, administration officials, legislators and stakeholders.
"This a major step forward for education reform in our state," said Education Commissioner Lucille E. Davy. "The new funding formula ties together a number of initiatives that the Governor and the department have been working on for two years: It helps to ensure that all of our children are prepared for success in the 21st century world by providing for an equitable distribution of resources and it increases the resources we are providing. It also requires districts to adhere to the efficiency reforms embodied in CORE and the district performance accountability reforms embodied in the new state monitoring system and the new student level data base."
The Attorney General has stated that the new formula meets the constitutional requirement of providing a thorough and efficient system of education for New Jersey students.
"After decades of court rulings and ad-hoc funding plans that balkanized our state, New Jersey finally has a formula that every student, school, and taxpayer can depend on," said Assemblyman Joseph Vas (D-Middlesex). "We have removed the blinders that prevented us from viewing each child as equal to his or her peers, drove a wedge between our cities and suburbs, and pushed our property tax system to the very brink of collapse."
"Today marks the end of a journey that has spanned six years, three administrations, and thousands of work hours," said Assemblyman Herb Conaway, M.D. (D-Burlington). "This is a formula we believe the state Supreme Court will agree meets needs of students, communities, boards, and taxpayers - all of whom crave certainty and predictability for the future."
Senator Barbara Buono (D-Middlesex) was the primary sponsor of A500/S4000 in the Senate. In addition to Assembly Speaker Joseph J. Roberts, Jr. (D-Camden), Assemblymen Joseph Vas (D-Middlesex) and Herb Conaway, Jr., M.D. (D-Burlington), other primary sponsors of the bill were Assemblymen Louis D. Greenwald (D-Camden), Joseph Cryan (D-Union), John J. Burzichelli (D-Gloucester), Patrick J. Diegnan, Jr. (D-Middlesex), David R. Mayer (D-Gloucester) and Neil M. Cohen (D-Union).
Scientists Identify Gene Link to Autism
Scientists have found a variation in a gene that may raise the risk of developing autism, especially when the variant is inherited from mothers rather than fathers. The gene, CNTNAP2, makes a protein that enables brain cells to communicate with each other through chemical signals and appears to play a role in brain cell development. Results of the study were reported online January 10 in the American Journal of Human Genetics by Aravinda Chakravarti, Ph.D., Dan E. Arking, Ph.D., and colleagues from the Johns Hopkins University School of Medicine, with Edwin Cook, M.D., and colleagues from the University of Illinois at Chicago.
"Autism is highly heritable," said NIMH Director Thomas R. Insel, M.D. "Identifying the genes involved is crucial to our ability to map out the pathology of this isolating and sometimes terribly disabling disease, which currently has no cure." The assertion that the CNTNAP2 gene appears to be involved is strengthened by the fact that each of the different analytical approaches the researchers used in this study led to the same conclusion. Results were replicated in a second, larger group of participants, further implicating the gene. Together, the two groups of participants comprised one of the largest autism studies reported to date.
Using a technique called genome-wide linkage analysis, the researchers found that a chromosome, 7q35, appeared to be linked to the disease. Looking deeper into that chromosome, they identified a gene -- CNTNAP2 -- that contained a variant relevant to autism. Where a single segment of the genetic code could contain either the chemical base adenine or thymine, children with autism tended to have inherited the thymine variant.
"This is a common variant," Chakravarti said. "People inherit it all the time. Our finding that it's associated with autism more often when it's inherited from mothers is intriguing, but needs to replicated. CNTNAP2 is an excellent candidate gene for autism. It encodes a protein that's known to mediate interactions between brain cells and that appears to enable a crucial aspect of brain-cell development. A gene variant that altered either of these activities could have significant impact."
Children with Autism May Have Abnormal Functioning of Mirror Neuron System
Using a novel imaging technique, researchers have found that children with autism spectrum disorders have more gray matter in the brain area that governs social processing and learning-by-seeing than children who don't have the developmental disorder. Basically, the "monkey see, monkey do" feature is broken in youngsters with autism, according to researcher Manzar Ashtari, Ph.D, of the Children's Hospital of Philadelphia. First observed in the macaque monkey, this is the brain system that governs our ability to empathize and learn by watching another person.
Ashtari conducted the study while at the Fay J. Lindner Center for Autism in North Shore-Long Island Jewish Health System in Bethpage, N.Y. She studied mirror neurons -- brain cells that activate when you perform an action, experience an emotion and when you see someone else doing the same thing. "Our findings suggest that an inability of the child with autism to relate to people and life situations in an ordinary way is the result of an abnormally functioning mirror neuron system," Ashtari reported.
The study, presented at the annual meeting of the Radiological Society of North America, involved 13 boys with "high-functioning" autism or Asperger's Disorder and an IQ greater than 70 and 12 neurotypical boys with an average age of 11. Brain function was assessed using a combination of two techniques: diffusion tensor imaging (DTI) and apparent diffusion coefficient based morphometry (ABM). Results showed that the children with ASDs had increased gray matter in brain regions of the parietal lobes that control our sense of environment. The children then underwent tests that assess learning and behavior.
"The larger the gray matter in the parietal lobes, the more restricted and the more stereotyped the behavior of the child," Ashtari said, adding that in the neurotypical children, the larger the gray matter in the parietal area, the higher the IQ. "But in the autistic brain, increased gray matter does not correspond to IQ, because this gray matter is not functioning properly," she said.
Scientists Identify Gene Link to Autism
Brain overgrowth in the latter part of an infant's first year may contribute to the onset of autistic characteristics, according to new research. These findings support concurrent research, which found brain overgrowth in children with autism as young as two years old. Lead researcher Joseph Piven, M.D., Director of the Neurodevelopmental Disorders Research Center at the University of North Carolina, Chapel Hill and an American College of Neuropsychopharacology (ACNP) member, said that behavioral studies of infants at high risk for autism suggest that the onset of most behavioral symptoms, which define the disorder, such as problems with social interaction, also occur at about age one. "One reason these findings are important is because early post-natal onset raises the possibility that there may be a window for early treatment and prevention that could be identified by future studies," Piven stated during the ACNP's annual meeting last December.
In normal brain development, neuronal connections are eliminated through a process called "pruning." This process refines normal brain connections and increases the efficiency of remaining connections in the brain. Piven said one possibility is that there is less pruning in children with autism and therefore, their brains become larger than in children without autism. Piven cautioned that while the study seems to suggest a link between brain overgrowth and autism, there are many variants of autism among children, so the ways in which children with autism develop and are affected by brain growth can greatly vary. Follow-up studies on children younger than two years old are currently underway.
Brain Overgrowth in Infants Linked to Autism
The Associated Press on January 9 reported that a rare genetic variation dramatically raises the risk of developing autism, a large study showed, opening new research targets for better understanding the disorder and for treating it.
Research into the causes of autism has focused on genetic causes because so many families have multiple children with the disorder. Thus far, only about 10 percent of autism cases have a known genetic cause. Boston-area researchers estimate the gene glitch they've identified accounts for another 1 percent of cases.
They found a segment of a chromosome which has genes linked to brain development and various developmental disorders was either missing or duplicated far more often in autistic people. The defect was inherited in some cases, but more often the result of a random genetic accident.
The results from the Autism Consortium study, released online Wednesday by the New England Journal of Medicine, confirm those of smaller studies by U.S. and Canadian research groups in the past year. The consortium verified its findings by checking two other DNA databases.
"They really did nail it," said Dr. Andrew Zimmerman, director of the Kennedy Krieger Institute's Center for Autism & Related Disorders in Baltimore, who was not involved in the research.
He predicted children newly diagnosed with autism or other developmental disorders now will be tested for this defect on chromosome 16 and that studies of many more DNA samples may reveal other autism-related gene variations.
Already, the findings are starting to be used to give some parents long-sought answers to burning questions: What caused autism in their child and how likely is it that any future children also would have autism, long known to run in families?
"We've provided very compelling evidence that this particular small stretch of the genome provides an important clue to the biological roots of autism," said lead researcher Mark J. Daly, an assistant genetics professor at Harvard Medical School and an investigator for the consortium, which includes researchers from 14 Boston-area universities and medical centers.
When the biological pathways involved are figured out, scientists can try to design drugs to target chemicals in the brain to treat autism, said Geraldine Dawson, chief science officer of the advocacy group Autism Speaks.
"I think chromosome 16 is now going to be a hotbed for autism research," said Thomas Lehner, head of the genomic research branch at the National Institute of Mental Health. "It gives us a very important lead."
Another study researcher, Dr. David Miller of Children's Hospital Boston, said the chromosome 16 variations increased the risk of autism a hundredfold. But he said the disorder must be due to a combination of genetic variations since there were cases of people who had the defect but didn't have autism.
Dr. Linda Brzustowicz, a Rutgers University genetics professor, said it could be that there are "a whole bunch of little causes" of autism.
"Every time you get one additional piece into the jigsaw puzzle, that makes fitting in the next piece easier," she said.
Autism, a complex, poorly understood disorder, is characterized by repetitive behaviors and poor social interaction and communication skills. Research has mainly centered on genetic causes, and on whether it could be caused by the mercury-based preservative once used in childhood vaccines, which has been repeatedly discounted.
The number of children diagnosed with autism has risen in recent years to as many as one in 150 American children, but experts are unsure whether its prevalence really is increasing or the trend is due to a broader definition of autism.
For their study, consortium researchers scanned all 46 chromosomes from DNA samples from 1,441 children with autism or related disorders. They also scanned DNA from most of their parents and 2,800 other people, none known to have autism.
The researchers found a 25-gene segment of chromosome 16 was missing in five children with autism; none of their parents had the deletion. That shows that in some cases the genetic glitch is not inherited from the parents, but instead due to a random accident while an egg or sperm is being formed.
Another seven autistic children had a chromosome 16 duplication, but all but one had parents with the same duplication.
The researchers confirmed their findings by looking at DNA databases from Children's Hospital Boston and Iceland. The same defect was found in 1 percent of those with autism or related disorders. It was found in just seven of about 19,000 Iceland samples from people without the disorder.
$5 Million Set to Begin Addressing Growing Needs of People with Autism
TRENTON -- New Jersey Department of Human Services' (DHS) Commissioner Jennifer Velez, addressing families of people with autism at Hackensack University Medical Center, yesterday announced the DHS Division of Developmental Disabilities' (DDD) goals to expand services to the autism community in New Jersey. In order to address the state's growing number of people with autism, Governor Jon S. Corzine and state legislators included in the state Fiscal Year 2008 budget, $5 million designed to increase services to people with autism.
Commissioner Velez described the department's goals to family members: "Our first goal is to increase services and supports to adults with autism," said Commissioner Velez. "This is absolutely critical because statistics show that, in New Jersey, one in 95 children is diagnosed with autism. That means there will be more services needed for children and adults in our communities."
Additional goals include providing services to children with autism and increasing the ability of the Autism Center at the University of Medicine and Dentistry of New Jersey to provide a comprehensive medical program for people with autism. "All of these goals are valuable and by achieving them, we are taking responsible steps toward addressing the needs of the autistic community here in New Jersey," said Commissioner Velez.
The $5 million expansion of autism services includes:
- $3 million to increase the amount of services available to adults with autism such as respite care, job coaching, transportation and in-home supports through the DDD "Real Life Choices" at-home service option. Real Life Choices provides a budget, based on an individual's needs, for a family to utilize to obtain needed services. These funds will serve a total of 62 adults from the DDD waiting list: nine of these adults have begun receiving services and 53 more people on the waiting list will begin receiving services by the end of this fiscal year on June 30.
- $1 million to double the amount of respite care and family support services for families who have children at home with autism. These funds will assist several hundred additional children and their families per year.
- $500,000 will increase the capacity of the Autism Center at the University of Medicine and Dentistry of New Jersey (UMDNJ) to provide patients and their families with access to a comprehensive medical program for individuals with autism.
- $500,000 has been provided to the state Department of Health and Senior Services for an Autism Registry, for the reporting of diagnoses of autism. These funds will enhance the knowledge and understanding of autism to both better plan for and provide services to children and adults with autism and to analyze contributing factors to the cause of the increase in autism.
DDD quick facts about services to people with autism:
- New Jersey has the highest incidence of autism in the nation at 1 in 95 children, compared to the national average of 1 in 150 children according to the latest federal Centers for Disease Control report.
- DDD serves 6,880 people of all ages with autism or autism spectrum disorders in the community (data through September 2007).
- Between 1999 and late 2007 the number of people with autism who are provided services by DDD in the community has grown by 218 percent, or 4,601 individuals.
- There are 5,544 individuals with autism served by DDD that are under 22 years of age. Most live with their families and receive primarily respite care or other in-home supports. Approximately 126 of these children are graduating from school in June 2008 and will be provided with personal skill training or employment programs.
- Of the total 6,880 people with autism, 703 reside outside the family home, in settings such as group homes, supervised apartments and "community care" homes where an individual lives with a trained caretaker.
- DDD currently spends more than $31 million per year on Medicaid Community Care Waiver eligible services for people with autism, plus $2 million in funding specifically appropriated for respite services for individuals with autism.