This newsletter was sent April 11, 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.

NEWS

Select Committee On Children With Special Needs Holds Hearing On Family Engagement

The Senate Select Committee on Children With Special Needs convened on April 3 for an informational hearing on family engagement. The Committee was established in 2015 by Senator Richard Pan to help strengthen systems of care for children and youth with complex needs. Ted Lempert, president of Children Now, opened the hearing by discussing opportunities for deepening family engagement in policymaking. Juno Duenas, executive director of Family Voices of California, followed with comments on the importance of family representation with examples from other states. Alice Mayall and Kausha King (a Project Leadership graduate) provided parent perspectives, while 14-year-old J.C. Aguirre (who has been involved in legislative advocacy for over 3 years!) offered ideas on how to better include students with disabilities in decision making. Katie Schlageter of Alameda County California Children’s Services provided input on engagement models that work, and California Department Of Health Care Services director Jennifer Kent gave a review of the current state of engagement efforts.

To watch a recording of the hearing, click here.

Advocates Must Continue To Protect Medi-Cal, Services For Children With Disabilities

Although the proposed American Health Care Act was not successful, the new Administration is continuing to examine ways to restructure access to health care that may impact Medi-Cal services for you, your child, or children you know/serve. It’s important that we still contact our legislators — even if they’re already in support of protecting critical services for children and youth with special health care needs — to let them know why Medi-Cal is such an essential program for our children.

For a list of how to contact your legislators, click here (you’ll find templates for letters and phone calls, suggested tweets while Congress is on recess, and a way to text your opinion).

Related: The National Helath Law Program’s ‘Lessons From California‘ highlights the harm that would have come to Medi-Cal from the American Health Care Act.

RESOURCES

Issue Brief: Pediatricians Reflect On Caring For Children With Special Needs

A new issue brief from the Lucile Packard Foundation For Children’s Health examines a study involving 39 key informants — 29 pediatricians and 11 parents, nurses, or other experts in the care of children with special health care needs (CYSHCN). Participants were asked about their experience and willingness to care for CYSHCN, and systemic changes that would facilitate their future participation in medical homes for these children. To view the report summarizing survey results, click here.

New Report Highlights Best Practices For Improving Transition Planning, Education

Thirty two state Title V programs have selected transition as one of their national performance measures. Got Transition’s new report pulls examples from these states of best practices (planned or underway) related to transition improvements, health care professional transition education, consumer transition training and leadership, transition communications, and interagency transition planning. To view the report, click here.

In addition, report findings were presented at a workshop for the Association Of Maternal And Child Health Programs‘ annual conference. To view a recording of the session, click here.

OPPORTUNITY FOR INPUT

RespectAbility Recruiting Twelve Youth For Nine-Week Fellowship In Washington, D.C.

RespectAbility, a nonprofit organization working to combat stigma and advance opportunities for people with disabilities, is recruiting 12 youth for their National Leadership Program this summer. They’re looking for diverse leaders from across the country who’d like to pursue careers in media, public policy, or advocacy. For more information, click here.

WEBINARS

New Webinar Series From Stanford To Focus On Hot Topics In Medicine

Stanford Medicine’s Center For Continuing Medical Education is launching a series of free webinars on hot topics in medicine, featuring experts who will provide guidance to physicians and other health professionals on controversial and challenging issues they may face. The first webinar is set for May 16 and will focus on Zika. For more information, click here.