Family Voices of California
April 12, 2019


Meet your legislator! California legislators will be on spring recess through Sunday, 4/21, making this a great time to schedule meetings in district offices. Find your state legislator.
Interested in specific bills? Looking for legislation on a particular topic? Want to know when a bill will be heard in committee? Log on to find and monitor bills, and register to receive automatic updates.

Weigh in on bills. The California State Legislature has new procedures for submitting letters on bills. Get information and log in to submit a letter. 

ACTION ALERTS -- Budget proposals to fund critical services and programs
#KeepThePromise: Families, self advocates, providers, and legislators turned out for #KeepThePromise rallies at the Capitol, San Diego, and Los Angeles to save Lanterman Act services and support an 8% increase for the system that provides services to people with intellectual and developmental disabilities, including children with special health care needs. The voices of families WILL make a difference, and more families are needed. Learn more, stay updated, and ask your legislators to support this effort with one click. 

Have challenges getting Durable Medical Equipment (DME)? Legislators need to hear from YOU. Share your story to support rate increases for DME such as oxygen, wheelchairs, ventilator equipment, etc. Recent cuts and changes to DME rates and newly proposed rate cuts threaten access to the DME medically complex children need to live safely at home. Proposals will be heard in the Assembly Budget Subcommittee on Health & Human Services on Monday, 4/22 at 2:30pm at the State Capitol. Share your story about challenges getting DME your child needs at the hearing, by phone or email. 


Support for Families of Children with Disabilities (San Francisco) seeks applicants for its Board of Directors. Learn more.
The California Department of Manged Health Care seeks Pharmacy Benefit Manager (PBM) Task Force members. Application due 4/19.
The State Council on Developmental Disabilities Orange County Office seeks applicants for its Regional Advisory Committee. Learn more or contact 714-558-4404.
The Los Angeles County Department of Health Care Services seeks patients and family caregivers to join patient family advisory councils. Contact
Participate in a survey to improve caregiver hospital experiences conducted by the Massachusetts Institute of Technology (MIT). Must be a U.S. resident who has visited a loved one in a hospital. 
The Child Neurology Foundation is conducting a brief survey to understand parent and caregiver experiences managing behavior in children and dependent adults with neurologic conditions.
The Supported Life Institute seeks speakers for its October 10-11, 2019 conference in Sacramento. Topics should empower people with developmental disabilities to be fully included in the community. Learn more.
The State Council on Developmental Disabilities (SCDD) seeks applicants for its Community Program Development Grant, which will provide up to $450,000 to organizations undertaking new approaches to serve Californians with developmental disabilities and their families. Those interested in implementing Project Leadership advocacy and leadership trainings are encouraged to apply.
The Association of Maternal & Child Health Programs (AMCHP) is offering up to $10,000 for Title V agencies and partners across the U.S. to replicate a practice in its Innovation Station, such as Project Leadership. Organizations may partner with Title V agencies to apply. Contact Alyssa Bosold at or Lynda Krisowaty at for information. 


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Congratulations Family Voices of California's newest Project Leadership facilitators! Twenty representatives of organizations from 5 counties completed a Project Leadership Training of Trainers workshop in Orange County in early April, expanding the training network to nearly 90 facilitators from 50 organizations in 4 states. Learn more about Project Leadership and find a training.
Family Voices of California Joins Nurses to Improve Pediatric Hospital Discharge practices. Family involvement is a critical component of quality improvement initiatives such as the California Nurse-Led Discharge Learning (CANDLE) Collaborative, a multidisciplinary group of clinicians from eight hospitals working together to improve hospital discharge processes for medically complex children. Led by the Institute for Nursing and Interprofessional Research at Children’s Hospital Los Angeles (CHLA), teams are implementing and testing innovative discharge planning initiatives and sharing best practices. Family Voices of California is an Advisor and active participant in CANDLE, and each hospital is encouraged to include families on local teams. Read more about this Lucile Packard Foundation for Children's Health-funded initiative.
Family Voices of California Project Leadership graduates Emelyn Lacayo and Daniel Vasquez are partnering with local officials, businesses, and others to create "Mia's Dream Come True Playground" in Hayward. Their dedication, hard work, and proactive partnerships have resulted in an "ultra inclusive" play space for all families to enjoy. "Project Leadership showed us that we have a voice and that we can make a difference in our children’s lives regardless of the obstacles," Lacayo said. Read more.

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