Network Newsletter sent on June 6, 2019
News, policy updates, resources, events, and advocacy opportunities
Deadline Approaching for Letters of Inquiry
Letters of Inquiry for funding from the Lucile Packard Foundation for Children’s Health will be accepted until Wednesday, July 10. Read detailed information about the funding criteria. Please submit only a Letter of Inquiry, not a full proposal.
Update: Stark Funding Inequities Persist for Children Served by Regional Centers
Despite recent increased attention to addressing funding inequities within California's system of services for children with developmental disabilities, a new report by Public Counsel finds continuing disparities in regional center funding between White and Hispanic clientele and between English-speaking and Spanish-speaking clientele. New data confirm a long-term trend of inequalities that have dogged the system for more than 25 years. The study was funded by the Lucile Packard Foundation for Children’s Health. Read more.
Medi-Cal Rate Cuts – Call to Action: Medi-Cal is planning to lower fee-for-service rates for certain durable medical equipment items. Family Voices of California is urging stakeholders to fill out a form opposing the cuts to send to legislators.
Electronic Visit Verification (EVV) Phase II Meeting
Monday, June 17
1 p.m. to 3 p.m. Pacific Time
1700 K Street, Sacramento – First Floor Conference Room
California Departments of Health Care Services, Social Services, Developmental Services, Public Health, and Aging
(800) 593-0582; Passcode: 6023673
Details: The meeting agenda and materials will be posted on the EVV website. EVV is a system that electronically verifies that in-home service visits occurred. The federal government requires that all states implement EVV for Medicaid-funded personal care services.
Applicants Sought for CSHCN Research Projects
The Children and Youth with Special Health Care Needs National Research Network (CYSHCNet) is seeking applications for its Emerging Investigator Guided Research Program. CYSHCNet is an interdisciplinary network focused on supporting, optimizing, and centralizing research on health systems that support CYSHCN and their families. Applications are accepted from investigators based at CYSCHNet member institutions in any discipline. See details about the projects, eligibility, and application process. A webinar is scheduled for June 10 to assist applicants. No registration required. For questions, contact Charlene Shelton at Charlene.Shelton@UCDenver.edu or (303) 724-4359.
Social Determinants of Health
Viewpoint: Shared Lessons from Pediatrics and Adult Health Care
Adult and pediatric providers share many of the same challenges when helping their patients manage chronic conditions. One strategy that both are employing is paying more attention to families, social networks, and the social determinants of health. A recent commentary co-authored by the National Center for Complex Health and Social Needs and the Lucile Packard Foundation for Children’s Health provides examples of lessons that adult health care can learn from pediatrics and vice versa. Read more.
Children with Medical Complexity
How 10 Hospitals Redefined Care for Medically Complex Children
Ten children’s hospitals across the country spent three years testing change concepts to improve care, avoid unnecessary visits, and reduce health care spending. A four-part webinar series highlights their success stories in transforming care for children with complex conditions. Their work was part of the Coordinating All Resources Effectively (CARE) Award. Read more and view the webinars.
Transition to Adult Care
- Preparing for the Transition from Pediatric to Adult Health Care: Parent Guide (PDF) – from Got Transition
Bills to Watch
- HR 2822 Family-to-Family Reauthorization Act of 2019 – Would extend funding for Family-to-Family Health Information Centers for five more years. Families staff the centers, which provide guidance and support to families of children with special health care needs.
- S 651 / HR 1814 The ABLE Age Adjustment Act – Would increase the threshold from age 26 to 46 for tax-favored ABLE (Achieving a Better Life Experience) accounts. ABLE accounts help individuals with disabilities save for and pay for disability-related expenses.
Ensuring Psychosocial Wellness in School and the Community for the Seriously Ill Child
Thursday, June 20
12 p.m. to 1 p.m. Pacific Time
Children's Hospice and Palliative Care Coalition, Pennsylvania's Pediatric Palliative Care Coalition, and Greater Illinois Pediatric Palliative Care Coalition
Details: This webinar will focus on specific ways to help children continue to succeed in school, activities, and the community despite a serious illness. Strategies for collaboration with school administrators, teachers, coaches, activity directors, clergy, and others will be highlighted. Fee. Read more and register.
- Guidance Updated for Sedation in Pediatric Dental Patients – from the American Academy of Pediatrics and the American Academy of Pediatric Dentistry
- Complex Child June Issue: Preemies and the NICU
Did You Know?
Mental Health Issues Account for Largest Percentage of Hospitalizations Among Youth
The highest percentage of hospitalizations in 2017 among California youth ages 0-17 was for mental health reasons. Mental diseases and disorders accounted for 14% of hospitalizations, almost twice the rate due to asthma/bronchitis. The rate of hospitalization due to mental health issues has been on the rise since 2008, according to kidsdata.org.
In the News
People with Special Needs, Police Cadets Connect Through Art
NBC Los Angeles, 6/2/19
A Final Comfort: ‘Palliative Transport’ Brings Dying Children Home
Kaiser Health News, 5/28/19
Health Tax Splits California Amid Need for Trump's Approval
NY Times, 5/24/19
Children with Cancer Wait an Average of 6.5 Years Longer Than Adults to Access New Drugs
Youth Health Magazine, 5/22/19