Network Newsletter sent on December 5, 2019
News, policy updates, resources, events, and advocacy opportunities
Foundation Grants Awarded
Six new grants from our Foundation will support work to improve the health care systems that serve children with special health care needs and their families. Grantees will use funds to study family advisory councils on a national level, develop a national CSHCN research agenda, enhance hospital discharge policies, improve access to durable medical equipment, and monitor California’s Whole Child Model implementation. Read about the grants.
Quality Standards/System Change
Case Study: An Innovative Approach to System Change
Given the complexity of the health care systems for CSHCN and their families, novel strategies are needed to build programs that lead to meaningful improvements. Innovation Station, a resource from the Association of Maternal and Child Health Programs (AMCHP), offers a detailed example of how North Carolina has worked over the past decade to examine its community system of care for CSHCN, identify sustainable changes and best practices, and coordinate the implementation of those practices with agencies, providers, and families. Read about the Innovative Approaches Systems Change Model (PDF), which has increased family engagement and bolstered community capacity for creating change.
- National Network for Advancing Systems of Services for Children and Youth with Special Health Care Needs – Year 1 Accomplishments (PDF) – from the Catalyst Center, Got Transition, and the National Resource Center for Patient/Family-Centered Medical Home. The Network focuses on improving three core health system components: access to the patient/family-centered medical home, transition into adult health care systems, and adoption of health care financing models that improve care and outcomes while achieving cost savings.
Webinar Reminder: Building a Transformative Partnership with Families and Clinicians
Wednesday, December 11
10:30 to 11:30 a.m. Pacific Time
Lucile Packard Foundation for Children's Health
Details: Learn about two statewide projects – a parent leadership training program and a hospital learning collaborative – and their efforts to integrate families as equal partners in addressing system issues. Read about the speakers and register.
Children with Medical Complexity
- Few Home Nurses Available to Care for Children with Complex Medical Needs
- Abstract: Unmet Respite Needs of Children with Medical Technology Dependence
California Children’s Services
CCS Transition to Adulthood Workgroup Meeting
Wednesday, December 18
Time and Dial-In info to be announced.
Details: The workgroup was formed to address three questions: at what age should transition activities begin; what transition activities should be required; and for what population of children. For call-in information write to email@example.com.
- Courageous Parents Network – Parent-created information available in English and Español for families of children with serious illness and complex conditions.
- Complex Child December Issue: Orthopedic Issues
Opinion: Join the Movement to Elect Kid-Friendly Leaders – Here’s How
Wendy Lazarus and Laurie Lipper, longtime advocates for children and co-founders of kidsimpact, write that the upcoming elections offer a vital opportunity to hold elected leaders accountable for the health and well-being of the country’s children, now and into the future. They suggest steps to take.
Mental and Behavioral Health
- Four Ways to Improve Pediatric Mental Health Care in the Emergency Department – from the Children’s Hospital Association and Seattle Children’s Hospital
Developmental Services Task Force to Meet
Monday, December 9
10 a.m. to 4 p.m. Pacific Time
Alta California Regional Center
2441 Harvard Street, Sacramento
1 (877) 692-8957; Passcode: 2126099
Details: The task force is an advisory group to the Department of Developmental Services. Members provide guidance on the delivery of services to Californians who have intellectual and developmental disabilities. Membership of the task force recently was greatly expanded. See a list (PDF) as of November 22. Read more about the task force and see the December 9 agenda (PDF).
State Proposing Major Modifications to Medi-Cal
The Department of Health Care Services has launched California Advancing and Innovating Medi-Cal (CalAIM), a multi-year initiative with a stated goal “to improve the quality of life and health outcomes" of Californians by “implementing broad delivery system, program and payment reform across the Medi-Cal program." The Department will conduct stakeholder engagement through 2019 and 2020 for this wide-ranging proposal. Many of the state’s children with special health care needs rely on Medi-Cal coverage. Learn more and find out how to become involved.
Mental Health and Self-Care for Caregivers
Thursday, December 12
11 a.m. to 12 p.m. Pacific Time
Christopher and Dana Reeve Foundation
Details: Second in a three-part series on self-care, managing anxiety, and mental health. This session will consider aspects of good mental health and explore ways that behavioral patterns people learned growing up influence self-care success. The presenter will discuss techniques to shift these patterns and encourage healthier habits. Register.
Building Capacity: Using the Touchpoints Approach for Productive Conversations with Parents About Their Children’s Development
Tuesday, December 17
11 a.m. to 12 p.m. Pacific Time
Help Me Grow National Center
Details: This webinar will provide an introduction to Brazelton Touchpoints, an evidence-based approach for building strong family-child relationships from before birth through the earliest years. Learn about the Touchpoints approach to having productive conversations with parents about developmental surveillance and screening. Register.
Did You Know?
Find State Data on CSHCN
The Catalyst Center produces the State Data Chartbook, a regularly updated, selective list of health indicators related to CSHCN for all 50 states as well as Puerto Rico and the District of Columbia. The book provides data on demographics, economics, child health services, insurance availability, and factors affecting coverage for CSHCN. The information can be compared state-by-state or against the national average.
Early Bird Registration Available for AMCHP Annual Conference
The Power of Connections: Building Equity for Healthy Generations is the theme for the annual conference of the Association of Maternal and Child Health Programs, scheduled for March 21-24 in Crystal City, Virginia. Register by February 21 to receive a discounted rate.
In the News
- Student Loan Borrowers with Disabilities Aren't Getting Help They Were Promised
- New Data Updates the Economic Value of Family Caregiving
Association of Health Care Journalists, 11/15/19
- School Becomes Model for How Peer Groups Can Help Students in Special Ed
Disability Scoop, 11/5/19