Family Voices of California
August 1, 2018

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Featured Articles

Article features Project Leadership graduates Bev Baker-Ajene, Yuki Baba, and Alison Beier
Children with Disabilities Endure Long Waits for Life-Changing Medical Equipment
Bev Baker-Ajene waited so long to get an adult-sized wheelchair for her teenage daughter, Savitri, that she eventually forgot she’d ordered it. 
For the better part of a year, Baker-Ajene pushed Savitri — who has cerebral palsy, spastic quadriplegia and epilepsy — in a child-sized chair that was too small for her. Baker-Ajene said she also has run into problems getting an appropriate shower chair for 17-year-old Savitri. Because of that, she mostly gives her daughter sponge baths in bed. 
Read the full report, "Threading the Labyrinth," from the Lucile Packard Foundation for Children's Health
California's ACA Rates To Rise 8.7% Next Year
Premiums in California’s health insurance exchange will rise by an average of 8.7 percent next year, marking a return to more modest increases despite ongoing threats to the Affordable Care Act.
Movie Theaters Subject To New ADA Requirements
Under new rules taking effect this summer, the nation's movie theaters must do more to accommodate people with disabilities.  

In the News

New York Woman Is Nation's First Lobbyist With Down Syndrome
As the first registered Capitol Hill lobbyist with Down Syndrome, Kayla McKeon speaks with powerful credibility when working to change laws that limit career opportunities for people with disabilities. 
New President to Lead Lucile Packard Foundation 
Cynthia Brandt Stover will assume the role of president and chief executive officer of the Lucile Packard Foundation for Children's Health on September 4. Brandt Stover has been campaign director at the Smithsonian Institution since 2013, and previously held positions at Stanford University and Mills College.
A Perspective on Residential Therapeutic Treatment
Parents' dreams for their children seldom include placing them away from the family home before college or adulthood. Yet that is the complicated choice many parents face when their teenagers' behavioral and mental health reaches a crisis point, whether due to an existing disability, or when a young person develops new struggles that put them at risk. The increasing number of young people with mental health challenges has been well documented. Nearly 1 in 5 young people aged 13-18 years experience a severe mental disorder at some point during their life.  See the full infographic from National Alliance Mental Illness (NAMI)
HRSA Challenge to Improve Care Coordination for CSHCN through Tech Innovations
In August, the Health Resources and Services Administration (HRSA) will launch the Care Coordination for Children with Special Health Care Needs (CSHCN) Challenge - a competition intended to encourage the creation of tech innovations to help families and case managers with the care and coordination of children with special health care needs. Prizes of $375,000 will be awarded. 
Get updates about the Challenge.
Minorities Much Less Likely to Access Mental Health Care, State Data Suggests
White people enrolled in Medi-Cal access mental health treatment at about twice the rate of other ethnic groups, even though they make up fewer than a quarter of plan enrollees, new state data suggests. 
Study: Most Kids Still Aren't Screened For Developmental Delays
It's recommended that all young children be regularly screened for developmental delays, but new research finds that's not happening, with fewer than 1 in 5 kids being evaluated in some areas. 


Western Center on Law and Poverty seeks stories of children on Medi-Cal being denied health care services because the “magic” EPSDT words weren’t used, or because the wrong medical necessity standard was applied. Stories are needed to support SB 1287 (Hernandez) which would codify EPSDT standards for Medi-Cal. Kim Lewis at
Electronic Visit Verification (EVV) - The President has signed into law bipartisan legislation that will delay the implementation of a requirement that agencies adopt EVV for in-home personal care services. Read more about the law here
The California State Legislature is on summer recess, reconvening August 6. Committee hearings and floor sessions will run until the August 24 deadline for each house to pass bills.
Disability Employment Incentive Act (DEIA) Introduced
The DEIA is designed to encourage employers to hire and retain employees with disabilities. This bill would increase three existing tax credits for employers who hire individuals with disabilities and make workplaces more accessible to those employees. Read more about the DEIA
Bill Introduced in the House Declaring People with Disabilities a Medically Underserved Population 
On July 26, Representatives Seth Moulton (D-MA) and Gregg Harper (R-MS) introduced the Healthcare Extension and Accessibility for Developmentally Disabled and Underserved Population (HEADs UP) Act of 2018. The HEADs UP Act, would designate people with Intellectual and Developmental Disabilities (I/DD) as a Medically Underserved Population (MUP) under the Health Services and Resources Administration (HRSA). People with I/DD experience poorer health and shortened life expectancies and lack access to even the most basic forms of care when compared to the non-disabled population. The MUP designation would help to close these gaps and achieve better health outcomes for the entire I/DD population.

Webinars & Conferences

Advocating at School for Children with Bleeding Disorders 
Thursday, August 2 (Webinar) Register
Congreso Familiar conference in Spanish for families and professionals
Saturday, August 4 (Hayward) Read the brochure
New Results on the Genetic Causes of Congenital Hydrocephalus 
Wednesday, August 15 4:00PM - 5:00PM PDT (Webinar) Register
A Conversation on Supporting Self-Management in Children and Adolescents with Complex Chronic Conditions
Wednesday, August 22 10:00AM - 11:00AM PDT (Webinar) Register
"Getting health insurance coverage for those mental health and ASD treatments" 
Tuesday, September 18 (Webinar) Karen Fessel will be conducting a webinar through the Dale Law Film. More information can be found at their
Los Angeles State of Reform Health Policy Conference
Wednesday, September 19 (Los Angeles) Register
SAVE THE DATE! Raising the Bar: California Children's Services (CCS) & Continuous Quality Improvement 
Thursday, October 4, 2018, The California Endowment, 2000 Franklin Street, Oakland 8:00AM-4:30PM
. This conference, sponsored by Children's Regional Integrated Service System (CRISS), CCS Executive Committee and FVCA, will provide attendees with information on successful and feasible strategies for improving local care delivery for children and youth with complex medical conditions in the CCS program. More information to come. 
An Update on Cannabidiol (CBD) Use in Pediatric Treatment Resistant Epilepsy
July 19, 2018 (Webinar) Watch the recording
A Conversation on Care Coordination for Children with Medical Complexity: Whose Care Is It, Anyway?
July 26, 2018 (Webinar) A wide range of perspectives on how to deliver effective care coordination – the issue that families most often say they would like to see addressed – were highlighted in the latest webinar in the
series on children with medical complexity hosted by the Lucile Packard Foundation for Children's Health. The recording and slides are now available.


A State Multi-Sector Framework for Supporting Children and Youth with Special Health Care Needs - Lucile Packard Foundation for Children's Health (LPFCH) Publication June 2018
Having trouble with your health plan?  
Find out what to do if you've been denied coverage. 
Advances in Understanding and Treating the Health Conditions that Frequently Accompany Autism
A special report by Autism Speaks on autism-associated health conditions and the latest guidelines on treatment and support for those affected by them. Read the report here
ATN/AIR-P Sleep Tool Kits
Many children and adults with autism have difficulty with sleep, which can affect their daytime functioning, as well as that of their families. The Autism Speaks Treatment Network has developed tool kits that can help address these challenges. Download the sleep tool kit parent booklet
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