Shared Decision-Making, Fragile X Syndrome, & Psychotropic Drugs

This newsletter was sent June 6, 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.

Reminder: Let your Senators know why Medi-Cal is critical to children and youth with special health care needs & urge them to vote ‘no‘ on the American Health Care Act. Resources here.


$80,000 Allocated In Budget To Fund Psychotropic Drug Reviews For Foster Youth

The National Center For Youth Law announced that their campaign to include an additional $80,000 in the state budget for stricter guidelines surrounding foster youth and psychotropic drugs was successful. Over-medicated children can face serious, lifelong health consequences including morbid obesity, diabetes, and cardiovascular damage. If approved by Governor Brown, the $80,000 would ensure foster children are prescribed psychotropic medications within safety thresholds, and that all kids on these drugs would have access to a psychiatric review no matter where they live. As it stands, many counties are not able to provide this third party review due to a shortage of child psychiatrists within California. For more information, click here.

DHCS Releases Final Evaluation Designs For Medi-Cal 2020 Initiatives

The Department Of Health Care Services (DHCS) has submitted final designs to evaluate four programs under California’s Medi-Cal 2020 demonstration for approval by the Centers For Medicare & Medicaid Services (CMS). DHCS developed the final evaluation designs in response to CMS’ comments and stakeholder feedback on draft evaluations. Over the course of the demonstration period, DHCS must specify methods to determine and analyze the impacts of the following programs: the California Children’s Services pilot, the Dental Transformation Initiative, the Global Payment Program, and services for Seniors and Persons with Disabilities. For more information, click here.


National Title V Children And Youth With Special Health Care Needs Program Profile

The Association Of Maternal & Child Health Programs has released a new report based on a survey of state and territorial agencies that provide services with federal Title V funding. It explores children and youth with special health care needs programs, the roles they play in systems of care, partnerships, financing of care, and emerging issues. To read the report, click here.

AAP Issues Guidance On Pediatrician’s Role In Shared Decision-Making For Children With Disabilities

In a new report from the American Academy Of Pediatrics (AAP), researchers acknowledge the pediatrician’s central role in the many decisions that come forth when raising a child with a disability. The guidance urges pediatricians to ensure information is “exchanged in both directions” between themselves and families. They should also take all values and priorities into account. Stressful health care situations that arise for families of children with disabilities and their care teams can sometimes prevent a decision, and the AAP’s guidance offers information and clinical tools for shared decision-making, or a framework that promotes family and clinical collaboration, that can help all parties arrive at the best treatment plan. To view the guidance, click here, and to read an article summarizing the report, click here.

Related: Pediatricians Pressed To Help Families Of Kids With Disabilities

New AAP Supplement On Current Knowledge, Research Regarding Fragile X Syndrome

A new supplement in this month’s issue of Pediatrics summarizes current knowledge of fragile X syndrome and reinforces the pediatrician’s role in early identification and working with families to improve outcomes and quality of life. It also discusses the importance of genetic testing in attempt to reach an actual diagnosis. To read the supplement, which consists of eight articles, click here, and to read an article summarizing findings, click here


Rare Disease Research Grants Now Available: Applications Due June 23

The National Organization For Rare Disorders is offering research grants for the study of five specific disorders: alveolar capillary dysplasia with misalignment of the pulmonary veins, appendix cancer and pseudomyxoma peritonei, cat eye syndrome, malonic aciduria, and post-orgasmic illness syndrome. Initial applications due June 23. For more information, click here.

Youth With Disabilities Encouraged To Join Sacramento’s Disability Action Day

The Disability Action Coalition is hosting its annual Disability Capitol Action Day in Sacramento on June 13, and YO! Disabled & Proud is calling on all youth with disabilties 16-28 years old (and their allies) to participate. Throughout the day, attendees meet with their legislators and discuss key bills. YO! hopes to focus on improving translation services during Individualized Education Plans (SB 354), suicide prevention in K-12 and college (AB 917 and AB 1318), and ensuring that fee waivers continue to aid lower-income students (AB 204). For more information, click here or email Yolanda at

Related: Disability Advocates Protest Medicaid Cuts


June 12: 2018 Fiscal Year Presidential Budget Review

Hosted by: The National Center On Birth Defects And Developmental Disabilities

More information and registration here.

June 13: Innovative Health Care Financing Strategies For Children And Youth With Special Needs 

Hosted by: The Catalyst Center and The American Academy Of Pediatrics

More information and registration here. Check out the accompanying supplement in Pediatricswhich contains eight articles analyzing value-based purchasing and value-based insurance design in relation to children with special needs. 

June 13: Maximizing Access: Connecting Health Care And Oral Health Care

Hosted by: The Office Of Disease Prevention And Health Promotion

More information and registration here.

June 13: Strength-Based Approaches To Screening Families For Health-Related Social Needs In The Health Care Setting

Hosted by: The Center For The Study Of Social Policy

More information and registration here.

June 15: Measuring Family Experience Of Care Integration To Improve Care Delivery

Hosted by: The Lucile Packard Foundation For Children’s Health and Family Voices

More information and registration here.

June 15: Impact Of Zika On Women And Children: Realities And Recommendations For Public Health Professionals And Clinicians

Hosted by: Boston University School Of Public Health

More information and registration here.

June 20: Achieving Partnership: Integrating Family Engagement In Systems Of Care

Hosted by: The National Center For Medical Home Implementation

More information and registration here.

June 22: Integrating Community Pharmacists Into Complex Care Management Programs

Hosted by: The Center For Health Care Strategies

More information and registration here.

June 24: Abuse Prevention And Reducing The Risk Of Violence

Hosted by: Parents Helping Parents

More information and registration here.

June 27: Autism And Technology

Hosted by: The Autism Research Institute

More information and registration here.

June 29: Bullying Prevention For Individuals With Intellectual And Developmental Disabilities

Hosted by: The University Center For Excellence In Developmental Disabilities

More information and registration here.


Complex Child June Edition: Education And Learning

Trump Budget Guts Medicaid, Disability Programs

Medicaid And Children With Special Health Care Needs 

After Outage, Ed Department Unveils New IDEA Site

Moms Are Speaking Out For Health Care

Trump’s Budget Takes Aim At My Sweet Son

Dealing With Dyslexia, Starting With One Family’s Battle For A Diagnosis

Surprise For A Mother Who Helped Her Paralyzed Son In Every Class

The High Cost Of Childhood Disruptive Behavior Disorders

Why Parents Of Kids With Special Needs Are Fighting Bathroom Bills

Stark Disparities Persist At Centers Serving Children With Special Needs

Infographic: Medicaid’s Role For Children With Special Health Care Needs

Do Charter Schools Serve Special Needs Kids? The Jury Is Out

A Baby Girl. A Baffling Disease. And The Only Way To Help Her Is To Hurt Her

CDC Annual Summary Observes Decreases In Infant Mortality Rates, Teen Birthrates

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