Date First Published: October 5, 2009
Take the Grandparents of Children with Autism Spectrum Disorders Survey.
http://www.iancommunity.org/cs/ian_research/grandparent_surveyThe Interactive Autism Network (IAN) -- the nation's largest online autism research project -- is pleased to announce the launch of the Grandparents of Children with Autism Spectrum Disorders Survey.
Grandparents of children with autism spectrum disorders (ASDs) have been contacting the IAN team to say how much they would like to participate in autism research since the IAN Project began in April, 2007. "We know so much about these children," they have told us. "Shouldn’t researchers know what we know?"
The IAN research team came to realize that little is known about the extent of grandparents' participation in supporting families of children with ASD, or about the impact that having a grandchild with an ASD has on the grandparents themselves. With the kind assistance of Bonnie Gillman, Director of the Grandparent Autism Network, the IAN team developed a pilot grandparent survey. Forty volunteer grandparents tested this, submitting insightful feedback that permitted us to make improvements. The survey, which addresses many aspects of having a grandchild on the spectrum and asks grandparents to share their experiences, is now ready!
We invite grandparents residing in the United States and its territories to complete this anonymous internet survey. Grandparents can have a biological, adoptive, or step-relationship with their grandchild on the autism spectrum, and the grandchild can be of any age. The grandchild's family does not have to be participating in the IAN Research project in order for the grandparent to take the survey.
We would appreciate it very much if our readers would spread the word about the Grandparents of Children with Autism Spectrum Disorder Survey to everyone they know in the autism community. It is our hope that the results of this survey will help researchers, policymakers, and advocates learn about the role grandparents play in the lives of children with ASD, and about how grandparents experience the joys and challenges of helping raise a child on the autism spectrum.
If you have any questions, please contact IAN at ian@ianproject.org or phone toll-free at 1-866-348-3440. Learn More About the IAN Project. (www.iancommunity.org)
Tuesday, October 20, 2009
Thursday, October 15, 2009
Self-Advocacy for Teens with Special Needs, Free Seminar
Please be sure to mark your calendars!
October 22 Self Advocacy for Teens with Special Needs Presented by: Valerie Gaus, PhD
Self-advocacy is an extremely important tool that students/adults with learning disabilities must have to ensure continued success when going off to college, entering the workforce, etc. Dr. Gaus' presentation will allow parents to help their children develop the necessary skills for communication, self-advocacy, autonomy, and the ability to access needed services and support.
Teens with learning differences grow up to be adults with learning differences. Once students know how they learn, they are then able to facilitate their own learning and advocate for themselves. Research supports the fact that less than 10% of students with special needs who go on to college, remain in college after the first year. Those who have the strongest self-advocacy skills are among that 10% who are most successful. Dr. Gaus' presentation provides tangible ways for parents to help their children become strong self advocates.
* Dr. Gaus has been a practicing cognitive-behavioral therapist serving adults and adolescents with dual diagnosis (intellectual disability with co-morbid psychiatric disorder), autism spectrum disorders, mood disorders, and anxiety disorders since she received her doctorate in clinical psychology from Stony Brook University in 1992. Dr. Gaus is on the advisory board of the Asperger Syndrome and High Functioning Autism Association, the grant review committee of the Organization for Autism Research, and an adjunct faculty at Long Island University/C.W. Post. She was also a founding board member of the New York Metro chapter of the National Association for the Dually Diagnosed. Dr. Gaus has written numerous articles and book chapters on mental health issues in developmental disabilities and has lectured extensively on these topics across the United States and abroad. Dr. Gaus has been applauded on the release of her book Cognitive-Behavioral Therapy for Adult Asperger Syndrome.
These informative free seminars are intended for all those interested in hearing about topics related to developmental disabilities. Each of these presentations will feature a different expert providing valuable tips and information on a wide array of topics pertaining to the field of autism and developmental disabilities. All of these seminars will be held from 7-9 p.m. in the Lecture Hall at DDI's Hollywood Drive Campus, 99 Hollywood Drive, Smithtown, NY. Space is limited for free lectures; anyone interested should call 631-366-5875 to register.
If you are interested in attending, please RSVP to Michael Romas at 631-366-5875 or via e-mail to mromas@ddiinfo.org Developmental Disabilities Institute 99 Hollywood Drive Smithtown, NY 11787 631-366-2900 From Eastern Long Island: LIE to Exit 55, make right on Motor Parkway. Continue about 200 ft and bare right onto Old Willets Path. Continue on Old Willets Path for approximately 2 miles, then cross over Jericho Turnpike. Old Willets Path now changes to Plymouth Blvd. Go to the first stop sign and make a left onto Parnell Drive. Make the next left onto Hollywood Drive. The campus is at the end of the block. From Western Long Island: LIE to Exit 55, make left onto Motor Parkway. Go over LIE bridge and proceed about 200 ft and bare right onto Old Willets Path. Follow directions above. *Presentation in DDI's Public Education (Lecture) Series does not in and of itself constitute or imply DDI's recommendation or endorsement. DDI's Public Education Series is intended only to provide the public with presentations related to the larger issue of Developmental Disability that are thought provoking , interesting and timely
October 22 Self Advocacy for Teens with Special Needs Presented by: Valerie Gaus, PhD
Self-advocacy is an extremely important tool that students/adults with learning disabilities must have to ensure continued success when going off to college, entering the workforce, etc. Dr. Gaus' presentation will allow parents to help their children develop the necessary skills for communication, self-advocacy, autonomy, and the ability to access needed services and support.
Teens with learning differences grow up to be adults with learning differences. Once students know how they learn, they are then able to facilitate their own learning and advocate for themselves. Research supports the fact that less than 10% of students with special needs who go on to college, remain in college after the first year. Those who have the strongest self-advocacy skills are among that 10% who are most successful. Dr. Gaus' presentation provides tangible ways for parents to help their children become strong self advocates.
* Dr. Gaus has been a practicing cognitive-behavioral therapist serving adults and adolescents with dual diagnosis (intellectual disability with co-morbid psychiatric disorder), autism spectrum disorders, mood disorders, and anxiety disorders since she received her doctorate in clinical psychology from Stony Brook University in 1992. Dr. Gaus is on the advisory board of the Asperger Syndrome and High Functioning Autism Association, the grant review committee of the Organization for Autism Research, and an adjunct faculty at Long Island University/C.W. Post. She was also a founding board member of the New York Metro chapter of the National Association for the Dually Diagnosed. Dr. Gaus has written numerous articles and book chapters on mental health issues in developmental disabilities and has lectured extensively on these topics across the United States and abroad. Dr. Gaus has been applauded on the release of her book Cognitive-Behavioral Therapy for Adult Asperger Syndrome.
These informative free seminars are intended for all those interested in hearing about topics related to developmental disabilities. Each of these presentations will feature a different expert providing valuable tips and information on a wide array of topics pertaining to the field of autism and developmental disabilities. All of these seminars will be held from 7-9 p.m. in the Lecture Hall at DDI's Hollywood Drive Campus, 99 Hollywood Drive, Smithtown, NY. Space is limited for free lectures; anyone interested should call 631-366-5875 to register.
If you are interested in attending, please RSVP to Michael Romas at 631-366-5875 or via e-mail to mromas@ddiinfo.org Developmental Disabilities Institute 99 Hollywood Drive Smithtown, NY 11787 631-366-2900 From Eastern Long Island: LIE to Exit 55, make right on Motor Parkway. Continue about 200 ft and bare right onto Old Willets Path. Continue on Old Willets Path for approximately 2 miles, then cross over Jericho Turnpike. Old Willets Path now changes to Plymouth Blvd. Go to the first stop sign and make a left onto Parnell Drive. Make the next left onto Hollywood Drive. The campus is at the end of the block. From Western Long Island: LIE to Exit 55, make left onto Motor Parkway. Go over LIE bridge and proceed about 200 ft and bare right onto Old Willets Path. Follow directions above. *Presentation in DDI's Public Education (Lecture) Series does not in and of itself constitute or imply DDI's recommendation or endorsement. DDI's Public Education Series is intended only to provide the public with presentations related to the larger issue of Developmental Disability that are thought provoking , interesting and timely
Tuesday, October 13, 2009
Op-Ed: Fight to overcome autism gets major boost, higher priority
Mon Oct 5, 2:29 am ET
By Health and Human Services Secretary Kathleen Sebelius
Washington, DC — Last Wednesday, President Obama visited the National Institutes of Health (NIH) to announce the single biggest investment in biomedical research in American history. Among the $5 billion in grants he announced are new explorations of longtime research targets from cancer to heart disease. But the grants also include the largest-ever investment in an Obama administration priority that has so far gone mostly unnoticed: autism research.President Obama has made autism a focus from the first days of his presidency. Less than a week after he was sworn in, my department’s Interagency Autism Coordinating Committee released its first-ever strategic plan for government autism research. And President Obama has backed this plan by adding $1 billion to his budget for autism over the next eight years. Altogether, the federal government will provide nearly twice as much funding for autism research in the upcoming fiscal year as we had just three years ago.We needed a new focus and new resources because autism has emerged as an urgent public health challenge. As recently as the 1990s, scientists thought autism was a rare disorder that affected 1 in every 2000 kids. Earlier this decade, we revised that estimate to say that 1 in every 150 kids was somewhere on the autism spectrum. Our most recent data suggest that autism may be even more common than that. Almost every American I talk to about this issue knows at least one family that is affected by autism. Autism has created new challenges for families, schools, and health care providers. When parents discover that their child has autism today, they’re left with a lot of questions, but few answers. What causes autism? How can it be prevented? Which treatments can help? Where can I get needed services? These questions aren’t new. And the government has tried to address them in the past, most notably with the Combating Autism Act, which passed in 2006. But there has never been a comprehensive, well-funded effort across government to overcome autism – until now.As Secretary of Health and Human Services, I oversee many of the agencies that are participating in this effort. At the NIH, new research funds are being used to address every aspect of autism from testing innovative treatments to exploring the unique needs of the growing number of adults with autism to searching for the genes underlying the disorder. At the Health Resources and Services Administration, they’re helping train health professionals to recognize autism early when we know treatments can be more effective. They’ve also created two national autism research networks that will allow researchers to gather data from different sites in order to identify the most promising treatments for autism. These networks will also create channels for these best practices to flow back to parents and providers around the country, so that Americans can have the latest evidence on which treatments work and which don’t.The Center for Medicare & Medicaid Services is working with states to provide targeted case management that helps kids with autism get the support they need at home and at school. And for the first time ever, they’re supporting medical home models that can help children with autism get the kind of coordinated, family-centered care that helps them thrive.President Obama is also taking steps to make sure health insurance reform will address the needs of families with autism. Under the plan he has proposed, private insurance companies would no longer be able to deny you coverage just because you or someone in your family has a condition like autism. And in order to participate in new health insurance exchanges, insurance companies will have to agree to offer mental health services that help families with autism on par with other benefits.Like public health challenges such as polio in the 1950s and HIV/AIDS in the 1980s, we must address the rising prevalence and complex needs of people with autism. We still have more questions than answers. But with additional funding and a new coordinated national strategy, we are working harder and more closely together to find those answers than ever before.
Kathleen Sebelius is the Secretary of Health and Human Services in President Barack Obama's Cabinet. She was the Democratic governor of the state of Kansas from 2003 to 2009.
By Health and Human Services Secretary Kathleen Sebelius
Washington, DC — Last Wednesday, President Obama visited the National Institutes of Health (NIH) to announce the single biggest investment in biomedical research in American history. Among the $5 billion in grants he announced are new explorations of longtime research targets from cancer to heart disease. But the grants also include the largest-ever investment in an Obama administration priority that has so far gone mostly unnoticed: autism research.President Obama has made autism a focus from the first days of his presidency. Less than a week after he was sworn in, my department’s Interagency Autism Coordinating Committee released its first-ever strategic plan for government autism research. And President Obama has backed this plan by adding $1 billion to his budget for autism over the next eight years. Altogether, the federal government will provide nearly twice as much funding for autism research in the upcoming fiscal year as we had just three years ago.We needed a new focus and new resources because autism has emerged as an urgent public health challenge. As recently as the 1990s, scientists thought autism was a rare disorder that affected 1 in every 2000 kids. Earlier this decade, we revised that estimate to say that 1 in every 150 kids was somewhere on the autism spectrum. Our most recent data suggest that autism may be even more common than that. Almost every American I talk to about this issue knows at least one family that is affected by autism. Autism has created new challenges for families, schools, and health care providers. When parents discover that their child has autism today, they’re left with a lot of questions, but few answers. What causes autism? How can it be prevented? Which treatments can help? Where can I get needed services? These questions aren’t new. And the government has tried to address them in the past, most notably with the Combating Autism Act, which passed in 2006. But there has never been a comprehensive, well-funded effort across government to overcome autism – until now.As Secretary of Health and Human Services, I oversee many of the agencies that are participating in this effort. At the NIH, new research funds are being used to address every aspect of autism from testing innovative treatments to exploring the unique needs of the growing number of adults with autism to searching for the genes underlying the disorder. At the Health Resources and Services Administration, they’re helping train health professionals to recognize autism early when we know treatments can be more effective. They’ve also created two national autism research networks that will allow researchers to gather data from different sites in order to identify the most promising treatments for autism. These networks will also create channels for these best practices to flow back to parents and providers around the country, so that Americans can have the latest evidence on which treatments work and which don’t.The Center for Medicare & Medicaid Services is working with states to provide targeted case management that helps kids with autism get the support they need at home and at school. And for the first time ever, they’re supporting medical home models that can help children with autism get the kind of coordinated, family-centered care that helps them thrive.President Obama is also taking steps to make sure health insurance reform will address the needs of families with autism. Under the plan he has proposed, private insurance companies would no longer be able to deny you coverage just because you or someone in your family has a condition like autism. And in order to participate in new health insurance exchanges, insurance companies will have to agree to offer mental health services that help families with autism on par with other benefits.Like public health challenges such as polio in the 1950s and HIV/AIDS in the 1980s, we must address the rising prevalence and complex needs of people with autism. We still have more questions than answers. But with additional funding and a new coordinated national strategy, we are working harder and more closely together to find those answers than ever before.
Kathleen Sebelius is the Secretary of Health and Human Services in President Barack Obama's Cabinet. She was the Democratic governor of the state of Kansas from 2003 to 2009.
Thursday, October 1, 2009
Kulanu Workshop - Understanding the Pediatrician’s Role with Children with Special Needs
Wednesday workshops
o Do you suspect your child has special needs?
o If your child does have special needs, is your doctor helpful?
o How can you advocate with medical professionals?
Understanding the Pediatrician’s Role with Children with Special Needs
Jack Levine, M.D.
Wednesday, October 21, 2009
7:30 p.m. to 9:00 p.m.
Kulanu Center for Special Services
620 Central Avenue
Cedarhurst, New York
Free of charge with Kulanu family membership. $5.00 for nonmembers.
Dr. Levine will speak about how parents of children with special needs can effectively partner and advocate for their child with their pediatrician and other health professionals. Dr. Levine will also speak about health conditions common to children with autism and what families can do to address these health concerns. Dr. Levine is a developmental pediatrician with a private practice in Queens and Nassau. He is the Medical Director of the Henry Viscardi School in Albertson, Chair of the American Academy of Pediatrics section on children with special needs and an active member of Nassau County Executive Tom Suozzi’s Task Force on Autism.
Pre-registration is requested by contacting Mark Hoffacker at (516) 569-3083 x136 or mark@kulanukids.org.
Next workshop – Wednesday, November 11, 2009
Parent Advocacy : How to tell your story effectively
Maggie Hoffman, Project DOCC (Delivery of Chronic Care)
P.A.R.C. is a division of Kulanu
o Do you suspect your child has special needs?
o If your child does have special needs, is your doctor helpful?
o How can you advocate with medical professionals?
Understanding the Pediatrician’s Role with Children with Special Needs
Jack Levine, M.D.
Wednesday, October 21, 2009
7:30 p.m. to 9:00 p.m.
Kulanu Center for Special Services
620 Central Avenue
Cedarhurst, New York
Free of charge with Kulanu family membership. $5.00 for nonmembers.
Dr. Levine will speak about how parents of children with special needs can effectively partner and advocate for their child with their pediatrician and other health professionals. Dr. Levine will also speak about health conditions common to children with autism and what families can do to address these health concerns. Dr. Levine is a developmental pediatrician with a private practice in Queens and Nassau. He is the Medical Director of the Henry Viscardi School in Albertson, Chair of the American Academy of Pediatrics section on children with special needs and an active member of Nassau County Executive Tom Suozzi’s Task Force on Autism.
Pre-registration is requested by contacting Mark Hoffacker at (516) 569-3083 x136 or mark@kulanukids.org.
Next workshop – Wednesday, November 11, 2009
Parent Advocacy : How to tell your story effectively
Maggie Hoffman, Project DOCC (Delivery of Chronic Care)
P.A.R.C. is a division of Kulanu
Sunday, Oct. 18 workshops exploring post-secondary opportunities for young adults with learning differences
Please join us!
Get Ready, Get Set, GO!
Sunday, Oct. 18, 9am - 1pm
Hillwood CommonsC.W. Post Campus Long Island University in BrookvilleGet Ready, Get Set, Go is the Compass Project's half-day series of workshops exploring post-secondary opportunities for young adults with learning differences.
Co-sponsored by The Center for Learning Differences, the program includes presentations by faculty from universities, colleges, and technical schools. FREE for students, $40 per parent or professional ($60 for two parents). Click here to download the brochure and registration form.
JCCA's Compass Project serves the special needs of high school and college-aged teens, ranging from youth with learning disabilities to youth on the autism spectrum. Compass provides counseling, educational direction, and social support to young people making the transition to an independent future.
Get Ready, Get Set, GO!
Sunday, Oct. 18, 9am - 1pm
Hillwood CommonsC.W. Post Campus Long Island University in BrookvilleGet Ready, Get Set, Go is the Compass Project's half-day series of workshops exploring post-secondary opportunities for young adults with learning differences.
Co-sponsored by The Center for Learning Differences, the program includes presentations by faculty from universities, colleges, and technical schools. FREE for students, $40 per parent or professional ($60 for two parents). Click here to download the brochure and registration form.
JCCA's Compass Project serves the special needs of high school and college-aged teens, ranging from youth with learning disabilities to youth on the autism spectrum. Compass provides counseling, educational direction, and social support to young people making the transition to an independent future.
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