This newsletter was sent August 29, 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.

SAVE THE DATE: Family Voices of California’s 16th annual Health Summit & Legislative Day will be held Feb. 26 – Feb. 27, 2018 in Sacramento. More information and registration here.

REMINDER: Take our California Children’s Services survey here.

Family Voices of California has created a website section devoted to highlighting the outstanding and ongoing work our Project Leadership graduates are involved in. The Project Leadership program is a parent advocacy training whose overall goal is to increase the number of family members of children with special health care needs who are prepared and supported to become advocates for health care policy and service improvements. Graduates have gone on to join family advisory councils, initiate and pass legislation, write op-eds and much more.

To check out Project Leadership In Action, click here.

RESOURCES

Updated Policy: Age For Transition To Adult Care Should Be Based On Individual Needs

The American Academy Of Pediatrics no longer recommends “arbitrary age limits on pediatric health care” and states the age of transition should be left to patients and pediatricians. The policy acknowledges, among other factors, the growing number of children with special health care needs surviving into adulthood whose only access to specialized services is through their pediatricians. To read the policy, click here.

Kidsdata.org Launches ‘Health Status’ Topic

Kidsdata.org houses varying levels of data on the health and well-being of children in communities across California. Their newest topic, ‘health status,’ provides information on whether a child’s health is fair/poor, good or excellent/very good. Results can be viewed for all of California (pictured on right), by individual county, and by race/ethnicity or family income level. For more information, click here.

Related: Use Kidsdata? Take their survey here.

OPPORTUNITY FOR INPUT

Survey Seeks Input From Siblings Of Children With Disabilities

The Center For Family Involvement is interested in learning how to better support siblings of children and youth with disabilities. Survey results will help inform the creation of future resources and projects. To access the questions, click here.

Losing Anthem/Cigna Coverage? Health Access California Wants To Hear From You

Anthem Blue Cross and Cigna will stop offering health insurance for most of the California individual market beginning next year. Coverage through Medicare, Medicaid and employers will remain unchanged. Over 300,000 people will need to switch plans, and some may face problems if currently in the middle of a course of treatment. Health Access California is advocating for continuity of care protections and seeking feedback from consumers who will be impacted by this change. To take the survey, click here.

Rally TOMORROW For AB 279: Regional Center Employee Wage Reimbursement

Assemblymember Chris Holden is organizing a public rally in support of his bill, AB 279, on the south steps of the State Capitol tomorrow at 10 a.m. The bill aims to preserve vital services for people with disabilities as regional centers in some of California’s largest cities are in danger of closing because the state won’t reimburse them for paying employees the locally mandated minimum wage. AB 279 would ensure these service organizations receive employee wage reimbursements. For more information, contact Naima Ford at naima.ford@asm.ca.gov

‘Bounce Out The Stigma’ Epilepsy Basketball Camps In Sacramento, Bay Area

The Epilepsy Foundation of Northern California is hosting two upcoming basketball camps for children with epilepsy 7-17 years old. The camps are four hours long and will be led by “Mighty” Mike Simmel, a former Harlem Wizards player who also has epilepsy. Tuition is $25. For more information on the Sacramento and Bay Area camps, click here.