Project Leadership RFA, Transition Webinar, & Presidential Q&A

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.


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, 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



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.

RelatedScientists 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


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


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.


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 PatientsEspecially KidsLand 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

The Parents Who Jump-Started Autism Research In California

Zika ‘Syndrome:’ Health Problems Mount As Babies Turn 1

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