This newsletter was sent August 23, 2016. If you’d like to receive our next bi-weekly digest full of a curated collection of resources, workshops, policy highlights, and action items that affect children and youth with special health care needs, please sign up here.
NEWS
SB 586 (CCS Redesign) Passes Out Of Assembly, Heads To Senate Floor
SB 586 passed out of Assembly on Aug. 19. The bill ensures continued quality of care for children and youth with special health care needs who are currenlty enrolled in California Children’s Services (CCS). Senator Ed Hernandez and his staff, as well as the CCS Advocates Coalition, have worked tirelessly on ensuring there are protections in place for children and their families, providers, and CCS staff. The bill now heads to the Senate Floor, and, assuming passage, to Governor Brown for signing. To read a current version of the bill, click here.
To read a list of the bill’s key protections, click here.
Related: California’s Most Fragile Children Hope To Keep Doctors Under New Bill
Updated Data On #HealthForAllKids Medi-Cal Expansion For Undocumented Children
In May, Medi-Cal expanded its coverage to include undocumented children. Since the expansion three months ago, 133,000 new kids have enrolled in full-scope Medi-Cal, raising the total coverage for children to 5.7 million. To view an infographic, click here, and to take a survey on how #Health4AllKids implementation is going in your community, click here.
Public Meetings Set To Address Regional Center Disparities
The Department Of Developmental Services is looking at disparity in regards to Regional Center purchase of service. They are seeking input from families and stakeholders in order to discover where disparity and cultural challenges exist when using or accessing Regional Center services, and areas of the disabilities service system that need clarification. Hearings will take place Aug. 25 and 26 in Southern California, and more information can be found here. Families can also participate remotely by completing this survey.
RESOURCES
Assistive Technology Resources
- FreedomTech: a financial loan program that offers loans ranging from $500 to $15,000 for those who need to purchase assistive technology equipment in California.
- AbleCloset: an organization that allows parents to search for and borrow pediatric special needs equipment within Northern California. Most items can be borrowed for six months, with the exception of speciality equpiment (two weeks to two months).
- California Assistive Technology Reuse Coalition: a service where you can find gently used assistive technology devices for sale or free, place ads for needed equipment, and borrow items from one of California’s Device Lending Libraries.
American Sign Language Support For Children And Families
The American Society For Deaf Children‘s resource page offers tools for families who’d like to help their child learn ASL. One website, BabySignLanguage.com, has a great list of flashcards with usage tips for successful memorization. The page also includes an ASL rhymes video, a list of recommended apps to help children and adults learn ASL, and a link to MyALSTech, which offers a large online ASL dictionary with conceptual graphics. To access the resource page, click here.
Health Care Coverage And Financing For Children With Special Health Care Needs: A Tutorial To Address Inequities
The Catalyst Center recently created a tutorial to help maternal and child health leaders, family leaders, and other stakeholders understand and address health care coverage inequities that exist among vulnerable subgroups of children and youth with special health care needs. To view the tutorial, click here, and to watch a webinar that will help you get acquainted with using the tutorial, click here.
Related: The Catalyst Center State at-a-glance Chartbook, a compilation of data on carefully selected indicators of health coverage and financing for children with special health care needs for all 50 states (recently updated).
Back To School Resources From The Child Mind Institute
The Child Mind Institute has compiled several back to school success kits for parents and educators on children with ADHD, sensory processing disorder, and selective mutism. They also have an article on starting school mornings without the stress, which contains tips for parents on how to get your child out the door with the least amount of conflict.
Related: Tips for helping children with epilepsy succeed in school, tips for supporting students with sickle cell disease, and a hands-on activity to identify your child’s strengths.
Disaster Preparedness: New PSA For People With Disabilities, Planning Tip Sheet
We Prepare Everyday is a 2-minute video that features people with disabilities taking action to prepare themselves and their families for emergencies. To watch the video, click here. Also, Family Voices National has issued a disaster planning tip sheet that can be downloaded here.
WEBINARS
August 25: Tips And Resources For Emergency Personnel: How To Communicate And Assist People With Autism
Sponsor: The Johnson Center For Child Health And Development
More information and registration here.
August 25: What’s New At Learning Ally?
Sponsor: Learning Ally
More information and registration here.
August 29: The Individual And Emergency Health Care Plan In The IEP And 504 Plan
Sponsor: Family Network On Disability
Two time options: 7am or 11am.
August 30: Engaging Individuals And Families In Shared Decision Making
Sponsor: Substance Abuse And Mental Health Services Administration
More information and registration here.
August 30: Helping Children And Young Adults With ADD/ADHD Succeed And Prosper
Sponsor: Family Network On Disabilities
More information and registration here.
August 31: The National Autism Data Center: Building Gauges To Measure National Progress On Transition Outcomes
Sponsor: Association Of University Centers On Disabilities
More information and registration here.
August 31: Mental Health Disparities Research: Cross-Cutting Aspects Of The National Institute Of Mental Health’s Strategic Plan
Sponsor: National Institute Of Mental Health
More information and registration here.
September 1: Preparing Adolescents With Asthma And Allergies For Transitions To Independent Living
Sponsor: Medical Home Chapter Champions Program On Asthma, Allergies, And Anaphylaxis
More information and registration here.
September 8: How To Use Data On A Decision-Making Group
Sponsor: Statewide Parent Advocacy Network
More information and registration here.
September 13: Living Well With ADHD: Scientific Guideposts To Improved Outcomes
Sponsor: Brain & Behavior Research Foundation
More information and registration here.
ARTICLES
South Asian Center For Kids With Special Needs Facing Eviction
What Happens To Developmentally Disabled As Parents Age, Die?
When Children Are Diagnosed With A Sensory Disorder
When It’s Time To Split Up The Family
How Phoenix Became The Most Autism-Friendly City In the World
Schools Told Not To Skimp On Behavior Supports
Bakersfield Couple Battles Daughter’s Cancer-And Insurance Company
Race, Ethnicity Affect Kids’ Access To Mental Health Care, Study Finds
Centering Disabled People In Conversations About Menstruation
New Treatments For Children With Eating Problems
Children With Epilepsy May Experience Vulnerability And Discrimination
Meds May Curb Risky Behavior For Kids With ADHD
Mother Forms A Community Of Families Affected By Rare Syndrome
Stanford: Teen Patients, Clinicians Create Solutions For Medical Issues They Say Need A Fix
Giving Adults With Autism The Skills To Build Independent Lives
Researchers Develop App To Help Children During Painful Medical Procedures
First Aid Training Helps Schools Spot Students With Mental Health Needs