New CYSHCN Systems of Care Brief, Project Leadership Update, & Medical Home Webinar

This newsletter was sent October 24, 2017. 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.

Save the date: Family Voices of California’s 16th annual Health Summit & Legislative Day will be held Feb. 26-Feb. 27, 2018 in Sacramento. More information and registration here.

Project Leadership Training-of-Trainers

Family Voices of California facilitated its Project Leadership Training-of-Trainers Workshop in San Francisco Oct. 11-13. The workshop prepares participants to implement the Project Leadership mentorship training to parents and caregivers of children and youth with special health care needs. Participants learned best practices for implementing the training as well as potential budgeting and funding options. Thirteen representatives from nine agencies were in attendance. For the first time, Family Voices opened the workshop to out-of-state agencies and welcomed participants from Hawaii, Oregon, and Montana. The next Project Leadership Training-of-Trainers workshop will be held Nov. 29-30 in Los Angeles (registration full). To learn more about Project Leadership, click here or email Allison Gray at agray@familyvoicesofca.org.

EVENTS

Lucile Packard Children’s Hospital Stanford To Hold Family-Friendly Open House

The Lucile Packard Children’s Hospital Stanford is running three tours of their new hospital in anticipation of its grand opening. During the 45-minute tours, guides will share highlights of the new space while kids participate in a trick-or-treat adventure. Oct. 27-29 / Palo Alto / times vary. To register, click here

Workshop: Coping With The Diagnosis Of Severe Food Allergies

Food Allergy Research And Education is partnering with Stanford University to host a two hour workshop on the often overlooked aspect of a food allergy diagnosis: the emotional toll. A panel of experts will offer personal and professional experience in supporting parents, families, and children with food allergies. Nov. 8 / Palo Alto / 7-9 p.m. To register, click here.

RESOURCES

Resources And Policy Options: Improving Systems Of Care For Children With Special Health Needs

The National Conference Of State Legislators published a new brief outlining programs, funding options, standards, data, state approaches, and policy options that states have used or may consider to improve systems of care for children and youth with special health care needs (CYSHCN) and their families. Report findings also indicate that families of CYSHCN have a variety of needs that extend beyond financial concerns including assistance navigating services, accessing a medical home, education and training, and/or appointment transportation. To read the report, click here

Study: Black, Hispanic Children With Developmental Delays Less Likely To Receive Early Intervention Services

A new study from the American Academy Of Pediatrics found that fewer than 25 percent of children eligible for early intervention services use them, and that black and Hispanic kids are much less likely to be identified as needing services than white children. Researchers interviewed 22 mothers to explore how maternal health beliefs influenced their decision to seek help for developmental delays. Black and Hispanic mothers often reported feeling pressured into using services rather than perceiving services as beneficial. To read the study, click here.

Report: The New Importance Of Children In America

The Lucile Packard Foundation For Children’s Health (LPFCH) released a new report emphasizing that all children  regardless of gender, ethnicity, geographic residence, or economic background   are critically important to the future sustainability of our economy. The report acknowledges that the aging, retiring Baby Boomer generation combined with low birth rates could create a shortage of children who would otherwise enter the workforce and pay taxes. In addition, the report calls for heavier investment in children in order to maximize their capabilities and future earning power. To read the report, click here, and to listen to a short interview with Dr. David Alexander, CEO of LPFCH about its findings, click here

WEBINARS

October 25: Retrofitting The Medical Home For Children With Special Health Care Needs

Hosted by: Family Voices Of California

More information and registration here.

October 25: Equity In School Funding: A Webinar For Local Community Groups And Education Leaders

Hosted by: Children Now

More information and registration here.

October 26: Positive Psychology, Mindfulness, And Prevention In Children’s Mental Health

Hosted by: Idaho Federation Of Families For Children’s Mental Health

More information and registration here.

October 30: Implementing Trauma-Informed Care Into Organizational Culture And Practice

Hosted by: Center For Health Care Strategies

More information and registration here.

November 1: Communicating With Your Kids: Sexuality And Developmental Disabilities 

Hosted by: Family Voices Of California

More information and registration here.

November 2: Fetal Alcohol Syndrome Disorder Advocacy: Setting The Stage For 2018

Hosted by: National Organization On Fetal Alcohol Syndrome

More information and registration here.

November 7: ADHD: What Is It, Who Has It, And What To Do About It?

Hosted by: Autism Research Institute

More information and registration here.

November 15: Addressing Symptoms Of PANS And POTS Nutritionally

Hosted by: Autism Research Institute

More information and registration here.

ARTICLES

New Blood Pressure Guidelines For Children

Autism Insurance Mandates Boost Access To Care, Study Says

Why Are More American Teenagers Than Ever Suffering From Severe Anxiety?

Tightening The Leash On Fake Service Animals

One Nurse Per 4,000 Pupils = Not The Healthiest Arrangement

Trial Set In LA Disabled Students’ Suit Alleging Community College Blocked Their Education

Target, Tommy Hilfiger Expand Adaptive Clothing Lines

Governor Signs Three Key Bills For Children

Sexuality & Disability Webinar, Transition Resources, & Disaster Preparedness

This newsletter was sent October 10, 2017. 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.

Save the date: Family Voices of California’s 16th annual Health Summit & Legislative Day will be held Feb. 26 – Feb. 27, 2018 in Sacramento. More information and registration here.

Communicating With Your Kids: Sexuality And Developmental Disabilities Webinar

Family Voices of California will host a Nov. 1st webinar aimed at helping parents of children with disabilities discuss sexuality. Additionally, attendees will have the opportunity to practice direct communication skills. Our presenter, Katherine McLaughlin, M.Ed, has 25 years of expertise in offering disability and sexuality courses to both parents and professionals. For more information registration, click here.

RESOURCES

New Quiz For Youth, Young Adults: Are You Ready To Transition To Adult Health Care?

In partnership with their National Young Adult Transition Advisory Group, Got Transition has created a transition quiz to assess the readiness levels of youth and young adults who are preparing to move to adult care. The quiz asks about important issues surrounding the transition years and provides guidance on topics such as what legal changes happen at 18 years old and how to sign up for health insurance. To take the quiz, click here.

Other helpful transition resources:

Got Transition’s new systematic review: “Outcome Evidence For Structured Pediatric To Adult Health Care Transition Interventions

The Department Of Health And Human Service’s August report to Congress: “Young Adults And Transitioning Youth With Autism Spectrum Disorder” (related Disability Scoop article here)

Exceptional Parent’s article on transitioning to adult neurological care

The American Academy Of Pediatrics and Got Transition’s new ECHO project to help professionals learn how to better transition youth to adult care

The Department Of Education’s updated “Transition Guide To Postsecondary Education And Employment For Students And Youth With Disabilities

American Red Cross Disaster Preparedness Guide For People With Disabilities

This comprehensive guide was designed to help people with physical, visual, auditory, or cognitive disabilities prepare for natural disasters and their consequences. The handbook contains printable checklists, disaster care plans, disaster kit essentials, and how to complete a personal assessment. To check it out, click here.

Also see:

Seattle Children’s emergency preparedness website section for children with special needs

Tip sheets on coping, stress, and trauma following natural disasters

WEBINARS

October 16: Implementing Trauma-Informed Care In Pediatric And Adult Primary Care Settings

Hosted by: Center For Health Care Strategies

More information and registration here.

October 18: Zika Virus And Your Eyes 

Hosted by: Prevent Blindness

More information and registration here.

Also see: Zika Care Connect, a new website that connects pregnant women, parents, and caregivers of infants/families affected by Zika to specialized care.

October 24: Making The Most Of Financial Assistance To Pay For Therapy And Support

Hosted by: The Johnson Center For Child Health And Development

More information and registration here.

October 24: Family-Centered Care And Conversation Techniques

Hosted by: The STAR Center

More information and registration here.

October 26: Eliminating Restrictive Practices: Alternative Approach To Managing Physically Aggressive Behavior Without Restraint Or Seclusion

Hosted by: SF Autism Society

More information and registration here.

October 27: Exploring A Community-Based Peer-To-Peer Approach To Mental Health And Wellness 

Hosted by: Vermont Family Network

More information and registration here.

November 7: ADHD: What Is It, Who Has It, And What To Do About It?

Hosted by: Autism Research Institute

More information and registration here.

ARTICLES

Nowhere To Go: Young People With Severe Autism Languish In Hospitals

For Foster Parents Of Disabled Children, Money Stays Tight

Learning To Breathe

Arresting Disabled Bodies

Complex Child October Edition: Allergies And Intolerances

Fighting For Breath: Access To Oxygen Therapy Should Not Be A Matter Of Location Or Luck

For Children With Severe Anxiety, Drugs Plus Therapy Help Best

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