This newsletter was sent September 6, 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.

Living With Rett Syndrome: A Glimpse Into Lauren’s Medical Home, Day-To-Day Life

19-year-old Lauren Brady of Whittier is a pretty typical teenager. She loves Justin Bieber, stayed up until 3 a.m. at her high school grad night, and, according to her mom, Sherri, has a “certain standard” when it comes to looking her best. Diagnosed at age 3 with Rett Syndrome, a rare neurological disorder that affects brain development and causes coordination and speech impediments, Lauren requires a wheelchair to get around, can’t speak, and needs a feeding tube. There are many moving parts to her comprehensive medical home that Sherri, who serves as Lauren’s primary caregiver, works with, often switching between ‘mom’ and ‘educator/advocate’ as Rett is still fairly foreign to many. Sherri’s goal is to stack Lauren’s care team with professionals who don’t view Rett as a hindrance or impossibility, but who are willing to learn from and work with the two of them.

To read a Q&A with Sherri, click here.

NEWS

SB 586 Passes Senate Floor, Heads To Governor Brown: Send Your Letter Of Support!

We’re one step closer—SB 586 (Hernandez) is headed to Governor Brown for a final signature! The bill, which passed the Senate floor unopposed on Aug. 29, will ensure continued quality of care for children and youth with special health care needs who are enrolled in California Children’s Services (CCS) as they transition to Medi-Cal managed care plans beginning in July of 2017. SB 586 advocates have tirelessly rallied to ensure that critical protections are in place during this transition. To read a list of the bill’s key protections, click here. For a customizable template letter of support, there are two options below:

Save The Date: FVCA Health Summit & Legislative Day To Be Held Feb. 27-28, 2017

Our 15th annual Health Summit will be held in February of next year in Sacramento. More information to come. To view photos, highlights, and presentations from this year, click here.

RESOURCES

Cystic Fibrosis Interactive Drug Development Pipeline And Clinical Trial Finder

The Cystic Fibrosis Foundation has launched a new interactive drug development pipeline and clinical trial finder. The pipeline shows both drugs that are in development and drugs that are currently being used, and you can sort by phases or therapeutic approach. The clinical trial finder lets you view open enrollment in your zip code as well as completed trials with results. To view the pipeline, click here, and to view the clinical trial finder, click here.

Supporting Young Children With Disabilities: Solutions For Improving Food Security

A new brief from Children’s HealthWatch looks at how the high costs associated with raising a child with disabilities can strain the family budget and lead to trade-offs between basic needs. The brief shows that families of children with special health care needs who received SSI were more likely to be food insecure compared with families of children with special health care needs who didn’t. To read the brief, click here.

Medical Home Modules For Pediatric Residency Programs And Educators

The American Academy Of Pediatrics has released five case-based educational modules on key medical home principles for pediatric residency programs. Each module is designed to be incorporated into existing curriculum by program directors and faculty. Collectively, the modules educate residents about the characteristics and benefits of the patient and family-centered medical home, care coordination, care planning, transition to adult care, and team-based care. To view the modules, click here.

EVENTS

10th Annual Celebracion de Familias Excepcionales Conference In Bakersfield

Exceptional Family Center will be hosting its 10th annual conference on Sept. 24 in celebration of the success of families and their children with developmental disabilities. There will be a keynote speaker, educational workshops, vendor displays, and Spanish-speaking presenters. Registration is $110 per attendee. For more information and registration, click here.