FVCA Honors Lifelong Advocate, Child Neurology Transition Tips, & Caregiving Youth

This newsletter was sent November 2, 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.


FVCA Honors CRISS Director For 20 Years Of Work On Behalf Of Children With Special Needs—Plus A Q&A On Family Engagement

FVCA presented Laurie Soman, director of the Children’s Regional Integrated Service System (CRISS), with a resolution from Senator Loni Hancock’s office in recognition of her 20 years of leadership as the director of CRISS and lifelong service to children with special needs. As the director of CRISS, a 27-county collaborative that works to create a seamless system of care for kids in California Children’s Services (CCS), Laurie spearheaded the first statewide family-centered care survey, a CRISS durable medical equipment survey, and a CRISS maintenance and transportation survey for CCS.

In addition to her work with CRISS, Laurie is the manager of policy analysis at Lucile Packard Children’s Hospital where she specializes in improving access to care for children with special needs, the project director for the CCS Medical Advisory Committee, a key stakeholder on the statewide CCS Redesign Advocacy Group, and a team member at the Alameda County Mental Health Initiative (the list goes on)!

We spoke with Laurie about her vast experience with systems of care, family engagement, CCS, and more—to read her Q&A, click here.


FVCA Nov. 16 Webinar To Focus On Identifying And Supporting Caregiving Youth

Caring for relatives or household members with special needs, mental illness, frailties of aging, or substance abuse issues can take a physical and psychological toll on children, and can lead to detrimental development and impacted academic success.

The American Association For Caregiving Youth established a model in 2006 to identify caregivers through the public school system and support the needs of youth as well as their families. Researchers in Los Angeles have launched an adapted model to assess for sibling caregivers of children with special health care needs.

This webinar is intended for families, community health workers, and medical professionals and will provide an overview of an interdisciplinary framework to serve the needs of caregiving youth and their families. To register for the webinar, click here



Brief: Treatment For Children With Autism Spectrum Disorder And The EPSDT Benefit

This brief from the National Academy For State Health Policy provides clarification on services to be provided to Medicaid-eligible children with autism and, specifically, the expected adherence to the Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) benefit. Examples of strategies currently being used by multiple states to provide necessary treatment services are included. To read the brief, click here

American Academy Of Pediatrics: The Neurologist’s Role In Supporting Transition To Adult Health Care

The American Academy Of Pediatrics has endorsed a consensus statement on the pediatric neurologists’ role in helping adolescent patients with neurological conditions transition to the adult health care system. The statement is published in Neurology and includes eight common principles for promoting a patient’s successful transition, with appropriate medical record documentation. The model was developed by a multidisciplinary panel convened by the Child Neurology Foudnation. To read the statement, click here


Slide Deck: Understanding Prader-Willi

Created by the Foundation For Prader-Willi Research, these 18 slides are intended to help families educate others on the complexities of Prader-Willi Syndrome (PWS). Topics covered include: causes, challenges, treatments, and the progression of people with PWS from infancy to adulthood. The foundation suggests using this slide deck if you’re looking to raise awareness about PWS in your community, or if you’d just like help starting the conversation. To download the slides, click here.


Tools To Support Organizations With Enrolling Remaining Uninsured Children

California has successfully reduced the number of uninsured children from nearly two million to under 100,000. Aligned with Medi-Cal’s 50th anniversary, Children Now released new materials to encourage the remaining population to enroll. To download a customizable health coverage outreach poster, click here (English, Spanish, and Chinese). To download a timeline that shows the progress of children’s health insurance since the 1990’s, click here.

Related: Read a 50-state report from The Georgetown University Center For Children And Families which found that the children’s health coverage rate is now at a historic high of 95%.


Stakeholder Listening Sessions To Help Develop The National Institute On Disability, Independent Living, And Rehabilitation Research’s Long-Range Plan

The NIDLRR is mandated by Congress to create a new long-range plan every five years, and they’re seeking stakeholder input to help inform future funding priorities and strategic direction. Three meetings have already taken place, and two remain on Nov. 18 and Dec. 5. For information on attending by phone, click here.  


Archived Webcast: Empowering Cystic Fibrosis Care From A Young Age

Sponsor: The Boomer Eaison Foundation

Click here to watch the webcast.

Webinar Series November 3-17: Affordable Care Act Eligibility And Enrollment Issues

Sponsor: Center On Budget And Policy Priorities

More information and registration here.

November 2: Depressed Mood In Autism Spectrum Disorder

Sponsor: Interactive Autism Network

More information and registration here.

November 2: Strengthening Collaboration Between Schools And Hospitals In The Management Of Chronic Conditions: Taking Hold Of Opportunities

Sponsor: National Association Of Chronic Disease Directors

More information and registration here.

November 2: An Introduction To The Child Health Patient Safety Organization

Sponsor: Children’s Hospital Association

More information and registration here.

November 3: Venous Thromboembolism In Children And Young Adults: State-Of-The Art In Diagnosis, Treatment, And Prevention

Sponsor: National Blood Clot Alliance

More information and registration here.

November 9: Beyond Checklists: Care Planning For Children With Special Health Care Needs

Sponsor: Lucile Packard Foundation For Children’s Health

More information and registration here.

November 9: Maximizing Enrollment In Maternal Child Health: Strategies To Address Challenging Outreach And Enrollment Situations

Sponsor: Association Of Maternal And Child Health Programs

More information and registration here.

November 9: Cognitive Behavioral Intervention For Tics: Information For Families

Sponsor: Tourette Association Of America

More information and registration here.

November 15: Implementing Public Health Genomics In Your State: Resources From The CDC Office Of Public Health Genomics 

Sponsor: Genetic Alliance

More information and registration here.

November 15: The Potential Role Of Epigenetics In Sex Differences In Autism

Sponsor: Autism Science Foundation

More information and registration here.

November 16: Caregiving Youth: A Community-Based Framework For Identifying And Supporting A Hidden Population

Sponsor: Family Voices Of California

More information and registration here.

November 17: How The Every Student Succeeds Act Affects Children With Disabilities

Sponsor: University Center For Excellence In Developmental Disabilities Education, Research, And Service

More information and registration here.


I Don’t Want To Be Inspiring

Autism Spectrum News Fall Edition: The Unique Needs Of Girls And Women With Autism

National Data Reveals Just How Hard Foster Care Is On Children’s Health

One Mom’s Shopping Cart Invention Is Helping Special Needs Kids, Seniors

For People With Disabilities, Getting Dental Care Can Be Difficult

Disability No Reason To Deny Organ Transplants, Lawmakers Say

Disabled And Disenfranchised: Families Fight To Restore Voting Rights

Her Toddler Suddenly Paralyzed, Mother Tries To Solve A Vexing Medical Mystery

Voters With Disabilities Fight For More Accessible Polling Places

There’s A Shortage Of Child Psychiatrists, And Kids Are Hurting

CMV Is A Greater Threat To infants Than Zika, But Far Less Often Discussed

An Alternative To The EpiPen Is Coming Back To Drugstores

Leaving Your Pediatrician? Here’s How To Choose Your Next Doctor

Can A Spoonful From Pepsi Help The Medicine Go Down?

The New Focus On Children’s Mental Health

Like Us!
Follow Us!
Email Us!