Network Newsletter sent on September 17, 2020
News, policy updates, resources, events, and advocacy opportunities
CSHCN and Equity
Webinar: Integrating the National Standards – Strategies for Building Equitable Systems of Care for CYSHCN through the Title V Needs Assessment
Wednesday, September 30
12 to 1 p.m. Pacific Time
Association of Maternal and Child Health Programs, National Academy for State Health Policy, and the Lucile Packard Foundation for Children’s Health
Details: Leaders from state Title V CSHCN programs will discuss how they use the National Standards for Systems of Care for CYSHCN to identify the needs of CSHCN and their families, particularly in regard to equity, as part of setting state priorities through the Title V Needs Assessment. Read more and register.
Webinar Series: Education & Mental Health Challenges During COVID-19 for Families of CSHCN
September 21 and September 25
1 p.m. Pacific Time
Family Voices of California
Details: Part 1, Choosing Peace over Choosing to Be the Perfect Parent: Family Mental Health Challenges, will cover mental health issues related to distance learning/education that parents and children face, and will provide strategies to help families cope. Part 2, Service Provision and Advocating for Your Rights, will offer options for families to address specific logistical questions they may encounter as they negotiate how best to support the educational development of their children. Translation in Spanish and Cantonese is available. Learn more and register for September 21 and September 25.
Additional resources and information are available on our COVID-19 web page.
- Parents, educators, and service providers offer recommendations about How to Adapt Special Education to the Remote-Learning Reality in an article from the Los Angeles Times reprinted in Disability Scoop.
- Caring for Children and Youth with Special Health Care Needs During the COVID-19 Pandemic – The American Academy of Pediatrics provides extensive guidance for physicians and families on topics ranging from how CSHCN should wear face coverings to when to get a COVID-19 test and how to provide optimal care at home and school.
- Three experts discuss Experiencing Grief During Covid-19 in a webinar from the Child Neurology Foundation.
- As COVID-19 makes digital connection increasingly important, the American Association of People with Disabilities offers resources to enhance Digital Accessibility in the Age of COVID-19.
Deadline Coming Up for Letters of Inquiry
Letters of Inquiry for grants from our Foundation are due October 1. Potential applicants should carefully review our program goals, priorities, and restrictions before submitting an LOI. Read about the application process.
Webinar Reminder: Improving Hospital Discharge Care
Tuesday, September 22
10 to 11 a.m. Pacific Time
Lucile Packard Foundation for Children’s Health
Details:Speakers from the California-based Nurse-led Discharge Learning Collaborative, which is sponsored by our Foundation, will describe two newly developed discharge practices, and discuss how these innovations can be integrated into existing hospital practices. Read more and register.
Also see: Report: Promoting Safe Hospital-to-Home Transitions – from the Children’s Hospital Association
Caregiving and In-Home Support Services
National Family Caregiving Advisory Council Meets, Reports on Progress
The RAISE Family Caregivers Act requires the federal government to develop a national family caregiving strategy to identify actions that communities, providers, and government may take to recognize and support family caregivers. The RAISE Family Caregiving Advisory Council held its fifth meeting on August 12. Find the agenda, video, and meeting summary. (Scroll to right-hand column.) Also see an April report on the council's "Progress Toward a National Strategy to Support Family Caregivers (PDF)."
Last Weeks to Complete US Census – Important for CSHCN
The Census Bureau will end all counting efforts for the 2020 census on September 30. Advocates are concerned that individuals with disabilities will be underrepresented. A lower count means less federal funding for the next decade for programs such as Medicaid, which is so crucial for CSHCN and their families. See various ways to take the census.
A Guide to Financing Mental Health Services in Schools
The California Children’s Trust has developed an issue brief and an accompanying presentation tool that offer practical guidance for financing social, emotional, and mental health in schools, a topic that is especially relevant during COVID-19. Read more.
‘Crip Camp’ Traces History of the Disability Movement
Crip Camp: A Disability Revolution, a Sundance award-winning documentary that chronicles the disability rights movement from the 1960s to the 1990s, is now available on Netflix.
Registration Open for The Arc's Virtual National Convention
The Arc’s National Convention, scheduled for October 26-28, offers the opportunity to connect and learn with advocates, professionals, people with intellectual and developmental disabilities, and their families. Topics to be covered include employment, education, advocacy, housing, and criminal justice, among others. Learn more and register.
Watch AMCHP Virtual Conference
All the recorded content from the August national conference of the Association of Maternal and Child Health Programs, including workshops, posters, and plenary sessions, is available for one year with registration. Read more and register. Fee.
In the News
- Hopes Fade for Coronavirus Relief for People with Disabilities
Disability Scoop, 9/14/20
- COVID-19 Disproportionately Impacting Those with Developmental Disabilities
Disability Scoop, 9/8/20
- For Kids with Special Needs, Online Schooling Divides Haves and Have-nots