Network Newsletter sent on January 9, 2020
News, policy updates, resources, events, and advocacy opportunities
Deadline Approaching for Grant Inquiries
February 12 is the deadline for Letters of Inquiry (LOI) for the Foundation’s next grant cycle. We fund programs and projects that will contribute to improving systems of care for children with special health care needs and their families. We strongly recommend that potential applicants carefully review our program goals, priorities, and restrictions before submitting an LOI. Read about the application process.
Wealth of Topics Covered in 2019 Publications
Helping Families Obtain Durable Medical Equipment and Supplies Through the California Children’s Services (CCS) Program – National Health Law Program
Family Burden and Medical Complexity: Wrestling with the Meaning and Impact of Commonly Used Terms – Meg Comeau, Catalyst Center
An Almost Complete List of Services Used by Families and Children with Special Health Care Needs – Edward L. Schor, MD, Lucile Packard Foundation for Children's Health
Identifying and Serving Children with Health Complexity: Spotlight of Efforts to Develop and Pilot the Kaiser Permanente Northwest Pediatric Care Together Program – Oregon Pediatric Improvement Partnership
Survey Compares Adult and Pediatric Chronic Condition Management in Primary Care Practices – Lucile Packard Foundation for Children's Health
The Future of Pediatrics: Redefining Chronic Care – Edward L. Schor, MD, Lucile Packard Foundation for Children's Health
Children with Medical Complexity
Apply to Host a Regional Convening on Complex Care
In 2020 the National Center for Complex Health and Social Needs will hold six convenings across the country to address complex care barriers in local communities. The project aims to facilitate information sharing and collaboration on a regional level and to foster ecosystems of complex care. Six organizations will have the opportunity to co-design a local convening with financial and technical support from the National Center. Applications will open January 15 and close February 29. Read more and see the Request for Proposals (PDF).
Webinar: Incorporating Community Voices to Improve Complex Care
Tuesday, January 21
10 to 11:30 a.m. Pacific Time
Center for Health Care Strategies, Robert Wood Johnson Foundation, Better Care Playbook
Details: To improve outcomes for patients with complex needs, health systems must meaningfully incorporate consumer perspectives into program design. However, many challenges exist to doing so. This webinar will explore how two health care innovators are engaging communities and using consumer feedback to rethink how services are designed and delivered. Although the focus is on adults, the topic has relevance for children and youth with complex needs. Read more and register.
Registration Open for Family Voices Health Summit
The Family Voices of California Health Summit & Legislative Day brings together families, youth, providers, policymakers, state agencies, and advocates who are interested in improving services and systems of care for children and youth with special health care needs. Free for families. Download flyers in English (PDF), Spanish (PDF) and Chinese (PDF). Interpretation available with preregistration.
J Street, Sacramento
Details: Read more and register.
California Children’s Services
CCS Advisory Group to Meet
Wednesday, January 15
10 a.m. – TBD
1700 K Street, Sacramento – First Floor Conference Room
(888) 989-6488; Passcode: 1945234
Details: Agenda not yet available. Find information on the Advisory Group website.
Intellectual and Developmental Disabilities
The Arc Seeks Nominees for Its Board
The Arc of the United States is recruiting members for its board of directors. Nominate someone or yourself. Learn more about the nominating priorities in the 2020 Board Prospectus (PDF) and see the online application.
Webinar: Data on the Health of People with Intellectual and Developmental Disabilities
Tuesday, January 21
1 to 2 p.m. Pacific Time
American Association on Intellectual and Developmental Disabilities (AAIDD) Research Interest Network
Details: This webinar will update participants on the status of improved data on the health of people with intellectual and developmental disabilities, and will solicit participant input to shape the next roadmap. Read more and register.
Medi-Cal Extends Full Coverage to Age 26; Restores Benefits; Encourages Developmental, Trauma Screenings
Effective January 1, Medi-Cal, California’s health care program for low-income individuals and families, offers full-scope coverage for adults from age 19 until they turn 26, regardless of their documentation status. Medi-Cal also will begin restoration of non-federally mandated "optional" health benefits that were cut during the last recession. The Department of Health Care Services also will begin covering payments to encourage Medi-Cal providers to administer age-appropriate developmental screenings. Read more.
- Fast Facts to Champion Support for Caregiver Depression – from the National Institute for Children’s Health Quality
- Complex Child January Issue: Emotions
- Emergency Kit Checklist for Families with Children and Youth with Special Healthcare Needs (CYSHCN) – from the Centers for Disease Control and Prevention
Strategies to Increase Financial Fitness with an ABLE Account
Thursday, January 23
11 a.m. Pacific Time
ABLE National Resource Center
Details: This webinar will provide tips on how an ABLE account can improve finances. ABLE accounts are tax-advantaged savings accounts that can be used to pay qualified disability expenses. Savings generally are not considered in determining eligibility for federal means-tested programs. Read more and register.
In the News
- Caring for Patients with Complex Conditions
Healthier, Happy Lives Blog, 1/7/20
- Clothing Size Guide in Works for Those with Down Syndrome
Disability Scoop, 1/7/20