 | Article features Project Leadership graduates Bev Baker-Ajene, Yuki Baba, and Alison Beier |
| Children with Disabilities Endure Long Waits for Life-Changing Medical Equipment
Bev Baker-Ajene waited so long to get an adult-sized wheelchair for her teenage daughter, Savitri, that she eventually forgot she’d ordered it.
For the better part of a year, Baker-Ajene pushed Savitri — who has cerebral palsy, spastic quadriplegia and epilepsy — in a child-sized chair that was too small for her. Baker-Ajene said she also has run into problems getting an appropriate shower chair for 17-year-old Savitri. Because of that, she mostly gives her daughter sponge baths in bed.
Read the full report, "Threading the Labyrinth," from the Lucile Packard Foundation for Children's Health here. California's ACA Rates To Rise 8.7% Next Year
Premiums in California’s health insurance exchange will rise by an average of 8.7 percent next year, marking a return to more modest increases despite ongoing threats to the Affordable Care Act.
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New President to Lead Lucile Packard Foundation
Cynthia Brandt Stover will assume the role of president and chief executive officer of the Lucile Packard Foundation for Children's Health on September 4. Brandt Stover has been campaign director at the Smithsonian Institution since 2013, and previously held positions at Stanford University and Mills College. A Perspective on Residential Therapeutic Treatment
Parents' dreams for their children seldom include placing them away from the family home before college or adulthood. Yet that is the complicated choice many parents face when their teenagers' behavioral and mental health reaches a crisis point, whether due to an existing disability, or when a young person develops new struggles that put them at risk. The increasing number of young people with mental health challenges has been well documented. Nearly 1 in 5 young people aged 13-18 years experience a severe mental disorder at some point during their life. See the full infographic from National Alliance Mental Illness (NAMI) here. HRSA Challenge to Improve Care Coordination for CSHCN through Tech Innovations
In August, the Health Resources and Services Administration (HRSA) will launch the Care Coordination for Children with Special Health Care Needs (CSHCN) Challenge - a competition intended to encourage the creation of tech innovations to help families and case managers with the care and coordination of children with special health care needs. Prizes of $375,000 will be awarded. Get updates about the Challenge.
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Western Center on Law and Poverty seeks stories of children on Medi-Cal being denied health care services because the “magic” EPSDT words weren’t used, or because the wrong medical necessity standard was applied. Stories are needed to support SB 1287 (Hernandez) which would codify EPSDT standards for Medi-Cal. Kim Lewis at lewis@healthlaw.org. Electronic Visit Verification (EVV) - The President has signed into law bipartisan legislation that will delay the implementation of a requirement that agencies adopt EVV for in-home personal care services. Read more about the law here. The California State Legislature is on summer recess, reconvening August 6. Committee hearings and floor sessions will run until the August 24 deadline for each house to pass bills. Disability Employment Incentive Act (DEIA) Introduced
The DEIA is designed to encourage employers to hire and retain employees with disabilities. This bill would increase three existing tax credits for employers who hire individuals with disabilities and make workplaces more accessible to those employees. Read more about the DEIA here. Bill Introduced in the House Declaring People with Disabilities a Medically Underserved Population
On July 26, Representatives Seth Moulton (D-MA) and Gregg Harper (R-MS) introduced the Healthcare Extension and Accessibility for Developmentally Disabled and Underserved Population (HEADs UP) Act of 2018. The HEADs UP Act, would designate people with Intellectual and Developmental Disabilities (I/DD) as a Medically Underserved Population (MUP) under the Health Services and Resources Administration (HRSA). People with I/DD experience poorer health and shortened life expectancies and lack access to even the most basic forms of care when compared to the non-disabled population. The MUP designation would help to close these gaps and achieve better health outcomes for the entire I/DD population.
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Upcoming Advocating at School for Children with Bleeding Disorders
Thursday, August 2 (Webinar) Register here. Congreso Familiar conference in Spanish for families and professionals
Saturday, August 4 (Hayward) Read the brochure here. New Results on the Genetic Causes of Congenital Hydrocephalus
Wednesday, August 15 4:00PM - 5:00PM PDT (Webinar) Register here. A Conversation on Supporting Self-Management in Children and Adolescents with Complex Chronic Conditions
Wednesday, August 22 10:00AM - 11:00AM PDT (Webinar) Register here. "Getting health insurance coverage for those mental health and ASD treatments"
Tuesday, September 18 (Webinar) Karen Fessel will be conducting a webinar through the Dale Law Film. More information can be found at their website. Los Angeles State of Reform Health Policy Conference
Wednesday, September 19 (Los Angeles) Register here. SAVE THE DATE! Raising the Bar: California Children's Services (CCS) & Continuous Quality Improvement
Thursday, October 4, 2018, The California Endowment, 2000 Franklin Street, Oakland 8:00AM-4:30PM. This conference, sponsored by Children's Regional Integrated Service System (CRISS), CCS Executive Committee and FVCA, will provide attendees with information on successful and feasible strategies for improving local care delivery for children and youth with complex medical conditions in the CCS program. More information to come. Archived An Update on Cannabidiol (CBD) Use in Pediatric Treatment Resistant Epilepsy
July 19, 2018 (Webinar) Watch the recording here. A Conversation on Care Coordination for Children with Medical Complexity: Whose Care Is It, Anyway?
July 26, 2018 (Webinar) A wide range of perspectives on how to deliver effective care coordination – the issue that families most often say they would like to see addressed – were highlighted in the latest webinar in the series on children with medical complexity hosted by the Lucile Packard Foundation for Children's Health. The recording and slides are now available.
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ATN/AIR-P Sleep Tool Kits
Many children and adults with autism have difficulty with sleep, which can affect their daytime functioning, as well as that of their families. The Autism Speaks Treatment Network has developed tool kits that can help address these challenges. Download the sleep tool kit parent booklet here!
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