This newsletter was sent October 18, 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
Request For Applications: Training Of Trainers Workshop For CA Organizations Serving Children With Special Needs
Family Voices of California is extending an invitation to California organizations serving families of children with special needs to send one representative to a two-day Project Leadership Training-of-Trainers Workshop in San Francisco or Los Angeles in January 2017. Project Leadership is a parent advocacy training whose overall goal is to increase the number of family members of children with special health care needs who are prepared and supported to become advocates for health care policy and service improvements. Please see the attached application for details. Project Leadership is funded by the Lucile Packard Foundation for Children’s Health. To review the request for application, click here.
Anti-Bullying Series Features Kids With Disabilities For Bullying Prevention Month
As part of October’s National Bullying Prevention Awareness Month initiated by the PACER Center, StopBullying.gov is taking this week to focus on how bullying can impact children and youth with disabilities by featuring youth stories on their blog. For more information on other populations who will be highlighted during this campaign, click here.
Related: Special needs bullying toolkit for parents, teachers, and students
Related: Bullying Often Triggers Fight Response In Kids With Disabilities
Related: October 26 webinar from Second Step: “Mean” Behavior And Aggression In Early Childhood: The Origins Of Bullying. More information and registration here.
Hillary Clinton And Donald Trump Answer Four Key Questions About Children’s Health
Presidential nominees Hillary Clinton and Donald Trump have submitted answers to four American Academy Of Pediatrics questions on children’s health as part of the AAP’s #VoteKids campaign. To read their answers, click here.
Related: Snapshot of where nominees stand on seven health care issues
Related: Oct. 28 webinar from the Center For Health Journalism: Future Of U.S. Health Care
RESOURCES
The Kaiser Family Foundation’s 50-State Medicaid Budget Survey
The Kaiser Family Foundation released its 16th annual Medicaid budget survey which provides an in-depth examination of the changes taking place in Medicaid programs across the country. It focuses on trends in enrollment and spending growth, developments in eligibility and enrollment policies, how states are using managed care, reimbursement rates and prescription drug costs, and payment and delivery system reforms. For the full report, click here, and to watch the recording of a briefing discussing the survey’s key findings, click here.
Related: States Increase Cost Controls To Manage Medicaid Growth
State Of Sickle Cell Disease: 2016 Report
The recently-formed Sickle Cell Disease Coalition has released their 2016 report which encompasses four priority areas: access to care in the United States, training and professional education, research and clinical trials, and global issues related to sickle cell disease. To read the report, click here, and to review a list of priorities, click here.
Related: Scientists Correct Mutation That Causes Sickle Cell Disease
Policy Data Brief: Access To Durable Medical Equipment
This brief from the Christopher & Dana Reeve Foundation identifies the primary barriers to accessing needed durable medical equipment and how to ensure that people can obtain what they need. The brief indicates that lack of insurance is not the primary reason people are unable to access adaptive equipment as 87% of people who reported problems were insured. To read the brief, click here.
OPPORTUNITY FOR INPUT
Five ABLE Act Stakeholder Meetings Set For Alameda County, Survey Seeks Input
The ABLE Act allows people with disabilities (acquired before the age of 26) to save up to $100,000 instead of $2,000 while still receiving Social Security Income or other benefits. Prior to the launch of ABLE accounts in California, the CalAble Board needs community stakeholder input. For more information on meeting dates and locations, click here. If you can’t make it to a meeting or live elsewhere, please complete this survey.
Related: ABLE Act Q&A for California residents
Related: Proposed Changes To ABLE Act Draw Opposition
WEBINARS
October 18: Opportunities For Employment For Individuals With Down Syndrome
Sponsor: National Down Syndrome Society
More information and registration here.
October 18: Recovery From Schizophrenia With And Without Medication
Sponsor: Brain And Behavior Research Foundation
More information and registration here.
October 19: Inclusion Works—For Business, Opportunity, Innovation, And Health
Sponsor: Association Of University Centers On Disabilities
More information and registration here.
October 20: Parent And School Collaboration For The Dyslexic Student
Sponsor: Learning Ally
More information and registration here.
October 20: Health Care Transition And What It Means For Parents
Sponsor: Family Network On Disabilities
More information and registration here.
October 25: Maximizing Insurance Enrollment In MCH: Strategies To Enroll Hard-To-Reach Populations
Sponsor: Association Of Maternal & Child Health Programs
More information and registration here.
October 26: How Social Determinants Of Health Impact Care Delivery
Sponsor: Children’s Hospital Association
More information and registration here.
October 26: Engaging Men And Dads In Children’s Lives
Sponsors: California WIC Association and First 5 Alameda County
More information and registration here.
October 27: Navigating The Criminal Justice System For People With Disabilities
Sponsor: USC University Center For Excellence In Developmental Disabilities
More information and registration here.
October 28: Clinton VS. Trump: The Future Of U.S. Health Care
Sponsor: Center For Health Journalism
More information and registration here.
November 1: Empowering People With Disabilities To Recognize And Report Abuse
Sponsor: California Foundation For Independent Living Centers
More information and registration here.
November 2: Obesity And Failure-To-Thrive Concerns In Children With Autism
Sponsors: Johnson Center For Child Health And Development and Autism Research Institute
More information and registration here.
ARTICLES
Cities Named Most Disability-Friendly
The Doctor Isn’t In: Medi-Cal Patients Struggle To Find Primary Care
What Life Is Like For Twins Living With Cystic Fibrosis
In Crisis, Out Of Room: Kids With Mental Illness Forced To Wait For Care
SF Police Officers To Team With Mental Health Workers In Crisis
Autism Speaks No Longer Seeking Cure
UC Davis Joins Large-Scale Effort To Identify Environmental Influences On Child Health
Miracle Makeovers: Rooms Of Hope Gives Dream Spaces To Sick Kids
Early Ed, Crucial For Latino Children With Learning Disabilities
CBS Launches Casting Diversity Initiative
Dismal Dental Care Access For Low-Income Californians Prompt New Solutions
Scarcity Of Mental Health Care Means Patients—Especially Kids—Land In ER
First Cohort Of Colorado Students With Down Syndrome Starts College This Fall
Obama Extends Controversial Program For Rare Pediatric Drugs
Education Department Aims To Improve Transition Outcomes