Network Newsletter sent on March 28, 2019
News, policy updates, resources, events, and advocacy opportunities
Quality Standards/System Improvement
Nurses Leading the Charge to Improve Pediatric Hospital Discharge
Taking a child home from the hospital can be a frightening experience. Discharge planning that does not adequately prepare families can result in poorer health outcomes for children, increased chances of hospital readmission, stress on families, and higher health care costs. Nurses are on the front line of successful discharge, and now they are taking the lead in a new project, the California Nurse-Led Discharge Learning Collaborative, that brings together eight hospitals to create, test, and share innovative discharge planning initiatives. Read about their work.
Also see previous Foundation-supported work on hospital discharge:
California Children's Services
CCS Advisory Group to Meet
Wednesday, April 10
10 a.m. – TBD Pacific Time
1700 K Street, Sacramento – First Floor Conference Room
Details: The call-in information, agenda and materials will be posted on the Advisory Group website.
Families Drive Better Outcomes in Children’s Health
Two mothers of children with special health care needs became “parent partners” on projects at the National Institute for Children’s Health Quality (NICHQ). This article highlights how their years-long efforts to elevate families’ voices promoted improvements in family-centered pediatric care and care for children with epilepsy. Read their stories.
Family Voices Leadership Conference – Early Bird Registration Ending
March 31 is the last day to take advantage of a reduced registration fee for the 2019 Family Voices Leadership Conference, scheduled for May 8-10 in Washington, DC. Read more and register.
Children with Medical Complexity
Medical, Social Complexity Webinar Series Continues
Tuesday, April 2
11 a.m. to 12 p.m. Pacific Time
Oregon Pediatric Improvement Partnership (OPIP) and Oregon Health Authority
Details: Part 2 of the series will address “Maximizing System-Level Data to Address Health and Social Complexity in Children.” Register and find suggested reading to prepare for the webinar.
Part 1: Recording and Slides Now Available
The recording and presentation slides now are available from the March 14 online conversation, “Identifying and Serving Children with Health Complexity.”
- Quick Reference Guide to Promising Care Models for Patients with Complex Needs – from The Commonwealth Fund.
As Home Care Expands, Let’s Make It Safer for Everyone – from Health Affairs. Five principles for improving the safety of care in the home for individuals with health care needs and seniors, as well as their caretakers.
“Keep the Promise” Rally in Sacramento for Intellectual/Developmental Disabilities Funding
Wednesday, April 3
10 a.m. Pacific Time
The Lanterman Coalition
Details: A statewide rally, march, and legislative visits to encourage increased funding for systems serving individuals with intellectual/developmental disabilities. Read more (PDF).
Medi-Cal Children’s Health Advisory Panel to Discuss Auditor’s Report on Inadequate Preventive Services
Thursday, April 4
10 a.m. to 2 p.m. Pacific Time
The California Endowment
1414 K Street, Sacramento – First Floor Conference Room
(888) 947-8923; Passcode: 2475546
Details: The agenda will include discussion of a newly released State Auditor’s report that found an annual average of 2.4 million children enrolled in Medi-Cal do not receive all required preventive services under the Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) program. The full meeting agenda is on the panel website.
Bill to Watch
- AB 236 – This bill revises requirements for establishing Family Empowerment Centers on Disability in 32 regions throughout California. The centers provide training and services to children and young adults with disabilities and their families.
Bill to Watch
The Advancing Care for Exceptional Kids Act (ACE Kids Act) would allow a state Medicaid program or child health plan to provide coordinated care in health homes for children with complex medical conditions, even allowing enrollment across state lines. It passed the House of Representatives on March 25, as part of a package of Medicaid bills, H.R. 1839.
- Exceptional Parent Magazine March issue – Schools and Camps
- American Association of People with Disabilities (AAPD) Career Center – A source for people with disabilities to search for professional careers. The center attracts leading companies and universities searching for qualified and diverse candidates.
Pursuing Health Equity: Start Where You Are – A Conversation About Individual Implicit Bias
Wednesday, April 10
12 p.m. to 1 p.m. Pacific Time
National Institute for Children’s Health Quality
Details: First in a series of webinars to support individuals who are pursuing equity for children within the health system. Register.
Improving Transition Outcomes for Youth SSI Recipients: Early Findings from the PROMISE Evaluation
Thursday, April 11
9 a.m. to 10 a.m. Pacific Time
Mathematica’s Center for Studying Disability Policy
Details: Speakers will discuss the landscape of transition services for youth with disabilities and the challenges that youth and families face in accessing those services. Findings from the PROMISE program, which seeks to help youth successfully transition to adulthood, will be presented. Register.
Pediatrics Included in Palliative Care Summit
Breakouts and poster sessions on pediatric palliative care will be included on the agenda of the Palliative Care Summit, scheduled for April 8-9 in San Francisco. The conference is geared toward physicians, nurses, social workers, nursing home administrators, chaplains and others interested in clinical research, quality, and policy as it pertains to palliative care. Continuing education credits available. See the agenda and register. Fee.
Disability Policy Seminar
April 8 to 10
The Arc, the American Association on Intellectual and Developmental Disabilities, the Association of University Centers on Disabilities, the National Association of Councils on Developmental Disabilities, Self-Advocates Becoming Empowered, and United Cerebral Palsy
Details: This event cultivates champions on Capitol Hill and advances the grassroots movement for people with intellectual and developmental disabilities. Fee. Read more and register.
Did You Know?
Data Available from National Survey of Children’s Health 2016-17
The combined 2016-2017 National Survey of Children’s Health (NSCH) data sets and codebooks have been released by the Data Resource Center (DRC), in collaboration with the Health Resources and Services Administration’s Maternal and Child Health Bureau. The combined 2016-2017 NSCH is the first multi-year data set acquired since the redesign of the NSCH in 2016. Data are available on more than 71,000 children ages 0-17. See the new information on childhealthdata.org.
In the News
- Betsy DeVos Grilled Again over Proposed Cuts to Special Olympics Funding
- Special Needs Kids Require Specialized Estate Planning
- Proposed CA State Bill Aims to Protect Special Needs Students After El Dorado Hills Death
Sacramento Bee, 3/25/19
- With $29 Million in Backing, MIT Launches Down Syndrome Center
Disability Scoop, 3/21/19
- Talking to Children About Terminal Illness
NY Times, 3/18/19