This newsletter was sent November 21, 2017. 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.

Don’t forget to register for our Nov. 29 webinar, Understanding California’s Regional Centers: From Yesterday To Today And Tomorrow. For more information, click here.

The Family Voices of California 16th annual Health Summit & Legislative Day is quickly approaching! This conference brings together families, providers, policymakers, state agencies, advocates, and more who are eager to improve services and systems of care for children and youth with special health care needs.

Panel topics will cover Medi-Cal updates, mental health, family engagement, California Children’s Services, and more. Additionally, there will be a separate track where youth and young adults with disabilities can learn and network in a parent-free space.

To read the 2017 Health Summit Highlights Report, click here.

To register for the 2018 Health Summit, click here (free for families, $50 suggested donation for professionals). Space is limited. See you there!

November: National Family Caregivers Month

The ARCH National Respite Network has developed a new set of resources, Charting The LifeCourse Respite Tools, to help caregivers understand the meaning of respite, learn from real life examples, and create a respite plan that enhances the lives of all family members. If you’re a family caregiver of a child or adult with a disability, chronic condition, or functional limitation (or a professional who works with family caregivers), you can register for a Dec. 7 webinar to learn how to best utilize these tools.

To browse the new respite toolkit, click here. To register for the informational webinar, click here.

Also see: our Q&A with Sherri, primary caregiver and care coordinator for daughter, Lauren.

STOP THE TAX BILL

Republican legislation aimed at enacting a sweeping $1.5 trillion in tax cuts has passed the House and now awaits a Senate vote after the holiday recess.

This legislation is detrimental to families of children and youth with special health care needs. In order to fund the massive tax cuts, the bill would:

Eliminate the Affordable Care Act individual mandate. This mandate makes it possible to ban health insurance companies from discriminating against people with preexisting conditions and keeps the insurance markets stable and functional.

Eliminate the medical tax break. This tax break allows individuals to deduct medical expenses that exceed 10 percent of their total income and helps families who are struggling to cover the enormous cost of raising a child with a disability.

The overall impact: an estimated 13 million people would lose coverage by 2025.

Call (866) 426-2631 to enter your zip code and get connected to your senators. The message: “Oppose any tax package that creates a deficit or decreases the number of people with health care coverage!”

RESOURCES

Fact Sheet: Addressing Culturally Competent Care For Children With Special Needs

The National Center For Medical Home Implementation has created a fact sheet with practical tips on addressing culturally competent care for children and youth with special health care needs. The fact sheet includes tactics for practices, clinicians, and state and community-based organizations. To read, click here.

Child Neurology Foundation Launches New Transition Of Care Website Section

The Child Neurology Foundation has created a new website section with information on transitioning patients from a child neurologist to an adult neurologist. The resources are for providers and families and include videos, self-assessment forms, plans of care, medical summaries, transfer letter samples, comic books, and more. To browse the new section, click here.