Family Engagement & CSHCN, Rural Health Recap, & An Autism Chartbook

This newsletter was sent August 9, 2016. If you’d like to receive our next bi-weekly digest full of a curated collection of resources, workshops, policy highlights, and action items that affect children and youth with special health care needs, please sign up here.


Parents, professionals, and health care providers gathered in Shasta County on July 29 for the Rural Children’s Health Conference, organized by Wendy Longwell, Family Resource Specialist at Rowell Family Empowerment Of Northern California. The day began with a panel on mental health which addressed how access to services has changed for children under Medi-Cal managed care, the issue of families bouncing back and forth between counseling agencies, and how services can be obtained through a child’s school. A few attendees wanted to know where to send their child if he/she was having a mental health crisis as no rural hospital in the area has psychiatric beds that can accommodate children. Via teleconference, Department Of Health Care Services (DHCS) Director Jennifer Kent acknowledged this issue, and said the Department understands that the lack of pediatric beds is a huge problem statewide.

Next, Director Kent spoke on Denti-Cal and what’s being done to improve access for rural children who need specialty dental care. Since so few providers accept the dental program, DHCS plans to implement provider incentive payments to encourage yearly dental checkups, and they’d like to invest another $750 million in dental care overall. Director Kent also mentioned that some rural counties have already applied for a competitive dental pilot program that would allow for innovative care in places like schools.

Following a break for lunch, discussion shifted to California Children’s Services (CCS) redesign with Mira Morton of California Children’s Hospital Association and Amy Turnipseed of Partnership Health Plan. Many attendees expressed they were eager to inform their families about proposed changes to the program as soon as possible. Reimbursement for transportation is a key issue for rural CCS communities, and travel is currently covered under the CCS program even when a child from Shasta County has to cross the border to Oregon for specific care. Attendees wondered what this process would look like under next year’s proposed CCS changes.

The day concluded with a panel on telehealth where representatives from the community spoke on both the successful integration of telehealth programs as well as the struggles. Since access to care is such an issue in the rural north, discussion also centered on strategies for implementing more programs in this underserved area.

To view photos from the conference, click here.


Webinar Recording And Slides: Family Protections And Continuity Of Care In The New CCS Whole-Child Model

If you missed our July 27 webinar, the full recording and slides are now available on our website. Beginning July 2017, children in select counties will be moved from California Children’s Services to Medi-Cal Managed Care plans. On this webinar, representatives from Western Center On Law And Poverty and Disability Rights California discuss how to keep your child’s existing providers during this switch, your continuity of care rights, protections, how to file a grievance, how to appeal decisions, and much more. To view the recording and slides, visit our webinar archive here

Report: Family Engagement In State Title V Maternal And Child Health And Children With Special Health Care Needs Programs

A new report from the Association of Maternal And Child Health Programs highlights 2014-15 national survey results on family engagement in Title V programs. Through case studies from five states, the report focuses on best practices and challenges within family engagement, or “a belief in the value of the family leadership at all levels from an individual, community, and policy level.” To read the report and learn more about how families can play a critical role, click here.


What Families Of Children With Down Syndrome Need To Know About The ABLE Act

Attorney and disability rights advocate Stephen Dale spoke on the Achieving A Better Life Experience (ABLE) Act at the National Down Syndrome Congress‘ annual convention. Last year, states became eligible to create ABLE programs that would allow people with disabilities to save money without losing their benefits. To view Stephen’s presentation, click here

Experience Matters: A View Into The Health And Wellbeing Of U.S. Children And Families With Autism Spectrum Disorder

This chartbook, prepared by The Child And Adolescent Health Measurement Initiative, represents one of the first national portraits of children with autism, how they receive their diagnoses, and how their daily lives are impacted. It has information that’s beneficial for families, advocates, policymakers, and researchers and covers topics such as common health problems for children with autism, how parents engage with the health care system to meet their child’s needs, and the role of early detection. To download the chartbook, click here

RelatedAutism Case Training, an American Academy Of Pediatrics-endorsed curriculum that provides real-life scenarios to improve early identification of children with autism, Puberty And Autism Toolkit from Autism Speaks.


Online Zika Course: What Pediatricians Need To Know

This free course from the American Academy Of Pediatrics provides an important  overview of the Zika virus: where it came from, and how it entered the Western Hemisphere. It also looks at risk factors for infection and covers information regarding Zika’s clinical manifestations, current screening and diagnostic protocols, and follow-up recommendations. To view the course, click here.

RelatedLifelong Care, Heartaches Ahead For Babies Born With Zika In The U.S.Zika Surge In Miami Neighborhood Prompts Travel Warning.


PsychDrugs Action California Campaign Needs Your Support

SB 253 is aimed at ensuring children and youth in foster care are receiving safe and appropriate psychotropic treatment. The bill asks doctors to provide better justification for prescriptions before they’re approved, and also pushes for better trauma care and mental health services within the system. SB 253 moves to the Assembly floor for a vote this week, and the National Center For Youth Law is calling on the community for letters of support. For a sample letter you can easily make your own, click here. Completed letters can be emailed to:

Related: Drugging Our Kids, an in-depth look at how foster care providers are fueling the medication of vulnerable children.


August 10: Making Accommodation Decisions On The College Campus

Sponsor: Mid-Atlantic ADA Center

More information and registration here.

August 11: Improving Health Outcomes Through Inclusion And Participation

Sponsor: Healthy People 2020

More information and registration here.

August 11: Serving On Groups That Make Decisions: Processes And Tools Groups Use

Sponsor: Statewide Parent Advocacy Network

More information and registration here.

August 18: Pathways To Employment

Sponsor: United Spinal Association

More information and registration here.

August 18: Assistive Technology For Struggling Readers

Sponsor: Learning Ally

More information and registration here

August 19: Introducing The Newborn Screening Public Square

Sponsor: Baby’s First Test

More information and registration here

August 25: Independent Living Centers For People With Disabilities

Sponsors: Children’s Hospital Los Angeles and University Of Southern California

More information and registration here.


Q&A: How Will Seriously Ill And Disabled Children Fare In Medi-Cal Managed Care?

August Edition Of Complex Child: Advocacy

New Voices In Medical Advocacy Are Often Patients

Medical Studies Involving Children Often Go Unpublished

Timing Of Autism Diagnosis Tied to Choice Of Treatment

California Overhauling Foster Care Rates To Support Family Caregivers

Autistic Oakland Boy Restrained 92 Times In 11 Months By Concord School

Head Start Benefits Children With Disabilities

How Families Of Children With Special Needs Can File Insurance Claims

Aging Poses New Challenges For Those With Special Needs

Barnyard Dust Offers Clue To Stopping Asthma In Children

Schools Reminded Not To Discriminate Against Kids With ADHD

Obama Care Expansion A Bumpy Ride For Rural Health Clinics

Study: 4/5 Kids With Epilepsy Have Other Health Problems

30 Percent Of Children’s Readmissions to Hospitals May Be Preventable

Even With Insurance, Family Of Medically Fragile Child Struggles To Find Home Health Care

Districts That Prioritize Inclusion Cited For High Graduation Rates For Students With Disabilities

Structured, Coordinated Approach Needed For Pediatric Diabetes Patients Transitioning To Adult Care

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