Network Newsletter sent on September 6, 2018
News, policy updates, resources, events, and advocacy opportunities
Children with Medical Complexity
Coming Up: A Conversation on Protecting the Rights of Children with Medical Complexity in an Era of Spending Reduction
The sixth in our series on Building Systems that Work for Children with Complex Health Care Needs, this conversation will focus on how medical-legal partnerships and other forms of advocacy can protect children's rights to receive appropriate and timely services. Jane Perkins, JD, MPH, legal director of the National Health Law Program, and other experts will discuss the Pediatrics article Protecting Rights of Children with Medical Complexity in an Era of Spending Reduction.
Thursday, September 20
11 a.m. to 12 p.m. Pacific Time
The Lucile Packard Foundation for Children's Health
California Children's Services
Event: Raising the Bar – California Children's Services and Continuous Quality Improvement
Thursday, October 4
8 a.m. to 4:30 p.m. Pacific Time
The California Endowment
2000 Franklin Street, Oakland
Children's Regional Integrated Service System (CRISS), CCS Executive Committee, Family Voices of California, and the Children's Specialty Care Coalition
Details: This conference will provide information on successful and feasible strategies for improving local care delivery for children and youth with complex medical conditions in the CCS program. Details and registration material will be available soon.
Viewpoint: Experimental State Health Program May Hurt Medically Fragile Children, Including Me
A first-person account from CCS client JC Aguirre III about the challenges involved with transferring CCS children to Medi-Cal managed care under the Whole-Child Model. Published in the California Health Report on September 4. Read his opinion piece.
A Mother's Quest to Empower Parents
A New Jersey mother first advocated for her medically compromised son in his early childhood years, then went on to a career helping other parents as they navigate confusing systems and pursue the medical care and other services their children need. Read her story and learn how New Jersey strives to empower parents.
Also see: How to Advocate – A short video featuring personal testimonials – from The Arc
Expanding Care Coordination to Promote Children's Health, Development and Well-Being
The Connecticut Children's Center for Care Coordination uses cross-sector care coordination to support families during times of crisis, connect them to services across sectors, and empower them to ensure their children reach their fullest developmental potential. The center serves children with special health care needs, but also those whose development may be affected by social determinants such as poverty. Read about how the center transformed its delivery of care coordination by implementing a family-centered approach to health and well-being.
Challenge: Care Coordination for CSHCN
The federal Maternal and Child Health Bureau is sponsoring a competition to support the development and testing of low-cost, scalable technological innovations to meet the information needs of families and case managers involved with care coordination for children with special health care needs. The deadline for submitting a Phase 1 application is October 30. Find out more.
- Lawsuit Threatens Affordable Care Act Preexisting Condition Protections but Impact Will Depend on Where You Live – from The Commonwealth Fund
- Kavanaugh Won't Say If He'll Uphold Obamacare Preexisting Conditions Protections – from Huff Post
Transition to Adult Care
Webinar: Transitioning Adolescents into Adult Care
Tuesday, September 25
12 p.m. to 1 p.m. Pacific Time
Coalition for Compassionate Care of California, Pennsylvania's Pediatric Palliative Care Coalition, and Greater Illinois Pediatric Palliative Care Coalition
Details: An introduction to health care transition to adult care. Speaker is Parag Shah, MD, MPH, Medical Director, Chronic Illness Transition Program at the Ann & Robert H. Lurie Children's Hospital of Chicago. Fee. CEU available. Register.
- Navigating the Transition from High School to College for Students with Disabilities (PDF) – from the California Employment Consortium for Youth (CECY)
- Federal Appeals Court Rules in Favor of Mainstreaming – from Disability Scoop
- Study: Minorities Labeled Learning Disabled Because of Social Inequalities – from U.S. News & World Report
- Respite Care Notebook – A tool that families can use to guide respite care providers in caring for a child with special health care needs – from the Child Neurology Foundation
- Complex Child September issue: Care at Home
Association of University Centers on Disabilities Conference
Details: Registration is now open for the conference, whose theme is We ALL Belong Here! Achieving Inclusive Communities. Fee. Read more and register.
In the News
- Insulin's High Cost Leads to Lethal Rationing
- The Extra Layer of Back-To-School Anxiety When Your Child Has Special Needs
Washington Post, 8/31/18
- ADHD Diagnoses May Be Rising in U.S.
- Online Education Is a Disability Rights Issue
Inside Higher Ed, 8/29/18