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Stay up-to-date on current news, reports, local research studies, and more.

Participate — Surveys & Research Studies (most recent listed first)

Deadline to apply for Youth Leadership Forum is Feb. 10
Summary of changes to Regional Center services
New law, July 2011: School districts now responsible for students' mental health needs
Healthcare options for kids in California
May is Mental Health Month - Download two helpful handouts
Attention Homebuyers: Wells Fargo Sharing Advantage Program
Triple P (Positive Parenting Program) in Marin
SCOE Parent Group
Teen Mental Health/Suicide Prevention Resources
I.E.P. iPhone App
California High School Exit Exam

Applications open for High School leadership Program
Golden opportunity: California high school juniors and seniors with disabilities can apply to be part of a five-day Youth Leadership Forum held in Sacramento July 23-27, 2012. The program provides information and resources about employment, education, independence, and assistive technology. In addition, students have the opportunity to interact with students their own age and staff with various disabilities to develop long-lasting friendships. Students stay in the dorms on campus at California State University (CSUS). The deadline to apply is Feb. 10. For more information, or to apply, see the DOR website here.

New Changes to regional center Services
Changes in the law enacted by the legislature effective July 1, 2011, have again resulted in how and if services are provided by the Regional Centers serving children and adults with developmental disabilities.

Here is a summary of changes which might in particular apply to families with children ages birth to 22 years:

Responsibility for Prevention Services has now been transferred to the Family Resource Centers which also provide Family Support under the Early Intervention Program. As a Family Resource Center, Matrix will hold that responsibility in our area. See the PRRS portion of our website for more information.
An Annual Family Program Fee will now be charged annually in addition to the Family Participation Costs that families pay for specified services. A family whose income is in excess of 400% of the Federal Poverty Level will be charged $150 per year.

Special Education instead of Adult Services for 18-22 year olds. If a student remains eligible for special education services between the ages of 18 and 22, they are not eligible for adult services from the Regional Center unless they have received a diploma or certificate of completion.
Receipt of Behavior Services provided for children under the age of 18 must be verified in writing by parents to ensure that services are delivered. Additionally, the law allows for the use of behavioral services paraprofessionals—qualifications to be determined.

Additional changes in the law might apply to your situation. Remember, there are appeal rights and exception policies for most determinations made by the Regional Centers.

Schools' New Mental Health Role | From Disability Rights California: For many years, California has provided school-related mental health services to special education students through county mental health agencies. This program is known as AB 3632 services, or in some counties, Chapter 26.5 or AB 2726 services. Last week, California passed a law that returns legal responsibility to school districts for providing school related mental health services to special education students. This does not change your children’s right to receive mental health services that they need to benefit from education.

The change in this law means that your school district will now be responsible for all of the services that used to be provided jointly by your school and your county department of mental health. School districts are receiving millions of dollars from the federal and state governments to provide these services to your children. The program for providing mental health services has NOT ended. Some school districts may enter into agreement with a county, so that the county mental health agency will continue to provide the services. Other school districts will provide the mental health services directly or contract with another agency to provide the service. Article continues here.

Kids with pre-existing conditions have options in california

More than 1 million California children under age 25 have a pre-existing health condition. Thanks to the Affordable Care Act, children can no longer be denied health coverage because of their health condition. Click here for a flyer detailing a variety of coverage options.

Mental Health handouts | May 3, 2011, is National Children’s Mental Health Awareness Day, and May is National Mental Health Month. Here are two handouts describing ways to promote positive mental health from birth on: Promoting Resilience and Supporting Children's Emotional Development.

Attention Homebuyers - Wells Fargo Sharing Advantage Program | When you buy a home or get a mortgage re-fi, ask your mortgage broker to donate to Matrix. If you use Wells Fargo Home Mortgage, Wells Fargo will make a $300 donation directly to Matrix at no cost to you through their Sharing Advantage Program. The contribution costs you nothing; just ask your Mortgage Consultant about the program and they will send the check to us! Your friends or family can also participate! For more information, contact Brian Johnson at 415.256.2111 or brian.q.johnson@wellsfargo.com
Working with another loan provider? Challenge them to match Wells Fargo's offer. Contact Brenda at 415.475.2118 or brendagm@matrixparents.org for additional information.

Triple P (Positive Parenting Program) in Marin Triple P helps build positive behaviors in children, confidence in parents' abilities and community support for raising children. Triple P suggests simple routines and small changes that can make a big difference to your family. It helps you understand the way your family works and uses the things you already say, think, feel, and do in new ways to create a stable, supportive, and harmonious family. Download this flyer to find accredited providers of the Triple P program in Marin.

SCOE Parents Group Forming | This group is currently still in the creation stage, but will be a valuable resource for Sonoma County, providing many services to students, parents, and teachers such as advocacy, fundraising, social gatherings, guest speakers, etc. They are seeking a committee of parents to make decisions about the direction of the group and the website. If interested visit www.scoeparents.org and complete the "join parent group" page. Questions call Cathy Van Dalen at 707.664.1237. [download flyer]

Teen Mental Health/Suicide Prevention Resources | The Marin County Office of Education has developed a webpage of Teen Mental Health/Suicide Prevention Resources in collaboration with Marin Community Mental Health, Bay Area Community Resources, Family Service Agency of Marin, Teen Mental Health Board and many other local partners. The online resources include videos from a recent SOS! ("Signs of Suicide") curriculum training for school staff and from a parent panel workshop, loss and bereavement materials for teachers and families, frequently asked questions about teen suicide prevention, action steps for students, and much more. Click here to learn more.

Surveys & Research Studies:

California Autism Survey closes Jan. 31 | Please participate in the largest California survey to date about the needs of individuals on the spectrum and their families. The closing date is January 31, 2012. Results will be used to assist California in becoming more responsive to the needs of our community during this turbulent financial time. The survey takes about 15 minutes to complete; it is available in English and Spanish on a secure server. Results of this survey will be published on the Autism Society of California website by mid-March. Parents and individuals may provide their email addresses if they wish to receive the results directly. To take the survey in English, click here. For the survey in Spanish, click here.

"Sesame Street" wants your input | "Sesame Street" is considering doing an episode about autism. David Cohen, a representative from the show, is working on two surveys to gather information, one for parents and one for providers. If you'd like to weigh in, take his survey here.

Survey for Adults on the Spectrum | This online survey is to be answered by persons 18 and older who are on the autism spectrum. Results will be used to create meaningful programs for adults with ASD. (Posted 12/12/11)

Stress, Aging, and Emotions (SAGE) Study at UCSF | Our study examines how parenting a child on the autism spectrum affects a woman’s health. We are examining how emotional well-being is related to immune cell aging. To see how mood and behavior affects cell aging over time, we will be taking blood samples and asking questions about your feelings and behaviors every six months for two years.

You will find out key measures of your own health, including resting energy expenditure, fasting blood glucose, insulin sensitivity, lean body mass, percent body fat and sleep quality. And we will reimburse you up to $450 for your time and cover parking and childcare expenses.

Participants must be non-smoking women between 20 and 50, with a child on the autism spectrum between 2 and 12. To find out if you qualify, call 415.476.7634 or send us an email at SAGE@ucsf.edu.

Parents Stress and Resources Study | I am a graduate student at Holy Names University in Oakland who is researching: 1) What are the specific factors among child characteristics and parent characteristics that are predictors of parenting stress when parenting a child with autism? and 2) What parental resources, if any, facilitate self-efficacy when parenting a child with autism? I am seeking parents to take part in an online survey, an interview, or BOTH. If you would like to partake in both, you will receive a $20.00 gift card for participating. If you wish to do both, please contact me at asd.parental.research@gmail.com for more information. Otherwise, if you would like to participate solely in the online survey, then please click onto the link, which will take you directly to the online survey: http://www.surveymonkey.com/s/Parentsofchildrenwithautism2011. The data gained from the study will be analyzed to create a foundation for future research in this area, so I hope to hear from you! Thank you. --Jodie Barton

Social Robot Study | The Puckett Institute is conducting a study using social robots to promote joint attention in children with special needs. In laboratory settings, social robots have been successful in promoting social interaction and joint attention in children with special needs. In this study parents will be asked to watch a 2-3 minute video of a robot and child interacting and answer 12 questions about the practicality and usefulness of the robot. The entire study can be done over the internet and takes about 10 minutes. To watch the video and participate go to this website. For more information please visit http://socialrobots.org or contact Jeremy Prior by phone at 828-210-8718 or 1-800-824-1182 or by email at jprior@puckett.org.

UCSF study | How do children with Autism, ADHD, and Sensory Processing Disorder process sound and touch? Help us find out! Dr. Marco and investigators at the UCSF Autism and Neurodevelopment Program are recruiting boys between 8 and 11 years of age who have been diagnosed with autism, ADHD, or SPD. Interested parents can call or e-mail the program for a confidential phone interview. If selected, subjects can participate in diagnostic evaluation, cognitive testing, a non-invasive brain activity scan, and a Magnetic Resonance Image (MRI) of the brain. Participants will be compensated $20/session. We are also recruiting healthy control subjects! For more info, please call or email Shivani Desai at 415.640.2680 or desais@neuropeds.ucsf.edu.

Kent State Questionnaire | Kent State University is conducting a survey called "Parent Perspectives on Planning Future Residential Options for Adolescents and Adults with Disabilities." If you're the parent of a youth or adult with intellectual disabilities, perhaps you'd like to contribute your perspectives to this research. The questionnaire takes about 15 minutes to complete, and it's anonymous.

UC Davis MIND Institute | Very little is known about what causes autism. The EARLI Study will help us understand why some children develop autism. It will identify possible causes, which could be genetic, environmental, or a combination of both. It is the largest study of its kind, involving families with greater risk for having a child with autism and collecting extensive information over several years. Other research shows that signs of autism can be seen as early as 12 months of age, so the EARLI Study will focus on exposures and events that occur during pregnancy and early childhood. To participate, families must live within two hours of the Sacramento Valley or the San Francisco Bay Area. For contact information, download a flyer here.

Stanford Research Opportunities | Stanford University is seeking individuals for various research studies. All projects offer a $100 honorarium for a 2-3 day participation, and all related expenses are covered (e.g., parking, meals, travel, etc.). If families live more than 50 miles from Stanford, a hotel stay for the days that they participate will be provided.

BRAIN DEVELOPMENT RESEARCH - Seeking individuals diagnosed with Fragile X Syndrome, Turner Syndrome, Williams Syndrome, or a developmental delay of unknown origin.

MATH SKILLS - Study seeks children with developmental disabilities age 9-23.

BRAIN FUNCTION - Seeking individuals between the ages of 15-26 who have a developmental delay (or have had learning disabilities) to participate as control subjects in research studies exploring the complex relationships among brain development, brain function, environmental influences, and behavior.

California State University - Northridge is looking for parents of children with autism to participate in a short research survey. This 20-minute online survey will be composed of questions about services your child has access to. Your responses will be completely anonymous and will help inform the community about autism services available to families. [download flyer in English] [download flyer in Spanish].

Autism Spectrum Disorder | The UCSF Autism and Neurodevelopment program is currently running three medical intervention studies for children diagnosed with an autism spectrum disorder. One is a medication trial of Memantine [download flyer], another is a study of the Digestive Enzyme CM-AT [download flyer], and the third is a Methyl B12 trial [download flyer].

UCSF Study: Genes Related to Autism Spectrum Disorders -- Dr. Lauren Weiss, PhD is a geneticist conducting a research study to find genes related to ASD. For more information on the study, including how you and your family can help, click here. You also may contact Keren Messing Guy, PhD, Study Coordinator at 415.476.6988 or email keren.messingguy@ucsf.edu

Parents of Children with Autism | Your participation is needed in a research study about your experience as a parent with your child's repetitive behavior. Answer a brief, anonymous survey composed of questions about your child. Click here to take survey. [download flyer]

I.E.P. iPhone App
The Parent Educational Advocacy Training Center (PEATC) has announced the development of an Individualized Education Program (IEP) Checklist iPhone application. The IEP is an individualized program designed to support the educational needs of school aged students with disabilities. This new IEP app helps parents of students with special needs become better-informed advocates by making IEP information easier to access. http://sites.google.com/a/region5ptac.org/take-5-jan-2010/home/te/IEP-Checklist-App

CA High School Exit Exam
The California Dept. of Education (CDE) has provided more clarification on the exemption from taking the California High School Exit Exam (CAHSEE) for students with IEPs or 504 Plans. Frequently Asked Questions are answered on the CDE website at http://www.cde.ca.gov/ta/tg/hs/cahseefaqexempt.asp

Office of Special Ed. Memo on RTI

RTI (Response to Intervention) and Evaluations for Eligibility
The federal Office of Special Education (OSEP) released a memo on January 21, 2011 stating that the process of Response to Intervention (RTI) cannot delay an initial evaluation for a child suspected of having a disability. Read more

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