Mom Spearheads Ouchless ER, Whole Child Model Delayed, & Autism Program Sessions

This newsletter was sent January 17, 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.

Reminder: Our 15th Annual Health Summit & Legislative Day will take place Feb. 27-28, 2017. More information and registration here. Free for families.

Marin Mom Collaborates With Local Hospital To Spearhead “Ouchless” ER Project

During an intense bout of croup, 3-year-old Aiden Taylor passed out at home and was rushed by ambulance to Marin General Hospital with his mother, Cathy — his father, Michael, followed by car. Although Aiden recovered from the infection, the calloused emotional treatment the Taylors experienced in the emergency room in early 2015 spurred Cathy’s commitment to transform Marin General’s pediatric emergency department to “Ouchless” — a holistic philosophy of care that not only addresses children’s physical needs, but also their (and their parents’) emotional needs.

Read Cathy’s story here.


Whole Child Model Implementation Date Delayed: Transition To Begin July 1, 2018

The Whole Child Model, or the state’s plan to streamline care by transitioning thousands of medically complex children currently enrolled in California Children’s Services to Medi-Cal managed care plans, has been pushed back one year. Previously, the Department Of Health Care Services had planned to start transitioning children in certain counties beginning July 1, 2017. On Jan. 10, Governor Brown introduced the 2017-18 budget, which detailed select initiatives that would be delayedthe Whole Child Model being one of them (refer to page six of the Budget Highlights here). The Governor also signed SB 586 into law on Sept. 25, a bill which ensures children with special needs will be protected during the Whole Child Model transition. The extended implementation timeline may come as a relief for many SB 586 advocates.


Program Sessions From Autism Society San Francisco’s Conference Now Available

At the end of last year, the Autism Society Of San Francisco held a conference titled “Into The Future: An Adult Autism/Developmental Disabilities Planning Workshop.” They’ve now made recordings and slides from all program sessions available online. Topics include  accessing health care, writing transition plans, planning for care after a caregiver is gone, and more. To browse conference sessions, click here.

Study Evaluates Transition Experience Of Youth And Young Adults With Diabetes

Researchers surveyed 602 type 1 diabetes patients, ages 18 to 30, and discovered that 21% experienced a gap in care of at least six months while transitioning from pediatric to adult care. The study, published in Diabetes Care, emphasized the need for more intense efforts to integrate transition preparation counseling and care coordination within pediatric type 1 diabetes education. Although researchers found that over 90% of youth with type 1 diabetes (still in pediatric care) received some counseling on diabetes management and screening tests, most patients expressed that they wanted to stay with their pediatric provider because they felt attached. To read the executive summary, click here (full article requires payment).

50-State Survey Reflecting Key Medicaid And CHIP Information As Of January 2017

The Kaiser Family Foundation has compiled a statewide survey on eligibility, enrollment, renewal, and cost sharing polices in Medicaid and the Children’s Health Insurance Program (CHIP). This annual survey identifies changes in these polices that took place in the past year. Among other findings, the survey discovered that Medicaid and CHIP are the central sources of health coverage for low-income children and pregnant women, with 49 states covering children and 34 states covering pregnant woman with incomes at or above 200% federal poverty level. To view the report, click here


Survey: Help Identify Barriers To Medi-Cal Enrollment For Former Foster Youth

Young adults who were in foster care at 18 or older qualify for Medi-Cal coverage until the age of 26regardless of income or immigration or status. Children Now is looking to learn about the community’s experience working to ensure these eligible former foster youth have Medi-Cal. Specifically, they would like help identifying barriers to enrollment or retention, supporting efforts to ensure coverage, and providing resources. To take the survey, click here.


Upcoming Webinar Series: Disability-Competent Care (Feb. 8 to March 22)

Sponsor: Resources For Integrated Care

Topics: long-term services and supports, care coordination, behavioral health, and more. More information and registration here.

January 19: Tourette Syndrome And ADHD: Starting A New Year With Health, School, And Home Supports

Sponsors: National Resource Center On ADHD and Tourette Association Of America

More information and registration here.

January 19: Understanding Depression In Teenagers

Sponsor: National Institute Of Mental Health

More information and registration here

January 19: IEP Series: Effective Parent-Teacher Conferences

Sponsor: Family Network On Disabilities

More information and registration here

January 23: Mental Health Research: What You Need To Know

Sponsor: National Institute Of Mental Health

More information and registration here.  

January 24: After Obamacare: The Future Of U.S. Health Care

Sponsor: Center For Health Journalism

More information and registration here.  

January 25: Neurobehavioral Disorder Associated With Prenatal Alcohol Exposure

Sponsor: American Academy Of Pediatrics

More information and registration here

January 25: Inclusion Through Innovation

Sponsor: National Down Syndrome Society

More information and registration here.

January 26: Mental Health Services In Schools For Students With Intellectual / Developmental Disabilities

Sponsor: University Center For Excellence In Developmental Disabilities

More information and registration here.

February 1: Treatment Across The Lifespan For Persons With Fetal Alcohol Spectrum

Sponsor: American Academy Of Pediatrics

More information and registration here.


Video: Kansas Parents Of Two Girls With Microcephaly Share Joys, Struggles Of Family Life

Related: Hartley Hooligans Blog (by the same family featured in the above article)

January Edition Of Complex Child Magazine: Emotions

Newborns Often Gen Unapproved Drugs. Now, A Push For Data

New Guidance Outlines Civil Rights Protections For Students With Disabilities

Telemedicine Helps Keep Kids In The Classroom

The Aging Of The Population With Down Syndrome Is A Positive Sign

Feed Your Kids Peanuts Early And Often, New Guidelines Urge

Nonprofits, Philanthropy, And Pediatric End-Of-Life Care—A Gap To Be Filled

Many U.S. Kids Live Far From Child Surgery Specialists

Health Claims On The Rise For Kids With Type 2 Diabetes, Obesity-Related Conditions

IEPs/504 Plans: Pediatrician Is Often First Stop For Families Navigating Educational Issues

With Too Few Nurses For Kids’ Home Care, Parents Push For Action

Gov. Brown’s Budget Shows Support For Medi-Cal

CVS Slashes Price Of Substitute EpiPen Auto-Injectors To $109.99

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