Children’s Bill Of Rights, Autism Transition, & Social Media Support For Parents Of CYSHCN

This newsletter was sent January 3, 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: Our 15th Annual Health Summit & Legislative Day will take place Feb. 27-28, 2017. More information and registration here. Free for families.


Proposed Bill Declares All Children In California Are Entitled To Basic Rights

Senator Richard Pan (D) introduced the Children’s Bill Of Rights (SB 18) at a news conference on Dec. 12, stating that all children and youth should have access to quality education, appropriate health care, and safe, supportive environments. The proposal, sponsored by Common Sense Kids Action, says the Legislator will work on establishing a framework that governs the rights of all children and youth. To read more, click here.

California State Senate Committee Chairs, Members Named For 2017-2018 Session

State Senate President Pro-Tem Kevin De Leon (D) made his selections for 2017-2018 committee chairs and members on Dec. 19. Known advocates for the disability community include Senator Holly Mitchell (D) as the new chair of the Senate Budget And Fiscal Review Committee, Senator Richard Pan (D) as the new chair of the Senate Budget Subcommittee #3 on Health And Human Services, Scott Wiener (D) as the new chair of the Senate Human Services Committee, and Senator Ed Hernandez (D) as the continuing chair of the Senate Health Committee. To read more about these appointments, click here for information from the California Disability Community Action Network.


New Autism Transition Report Released From The Government Accountability Office

Titled “Youth With Autism: Roundtable Views Of Services Needed During The Transition Into Adulthood,” this report examines the types of services and supports transitioning youth with autism require to reach their adulthood goals. It also looks at the characteristics of these services and supports, and how youth with autism can be fully integrated into society. The report is the result of a roundtable discussion with adults with autism, parents of youth with autism, providers, and researchers. To read the report, click here.

Study Finds U.S. Families Provide 1.5 Billion Hours Of At-Home Care To Children With Chronic Medical Needs At Substantial Economic Cost

In a new American Academy Of Pediatrics study titled “Family-Provided Healthcare For Children With Special Healthcare Needs,” researchers found that roughly 5.6 million children with special needs are receiving 1.5 billion hours of at-home care that, if replaced with labor, would cost the U.S. health care system an estimated $12-$36 billion a year. The study also found that costs borne by caregivers who provide time-intensive care were greater for those who had children with more severe conditions. To read the abstract, click here (full study only available to AAP members). 

The Role Of Online Parent-To-Parent Support In Educating Parents Of Children With Special Health Care Needs

A new study from the Journal Of Medical Internet Research explores the role of digital parent-to-parent support and evaluates its effectiveness as a resource for parents of children with special health care needs. Researchers found that, with the aid of digital parent-to-parent emotional and informational support, parents often developed the ability to advocate for their child and gained a deeper understanding of their child’s condition. Also, because social media opens new opportunities, the researches also suggest that providers develop appropriate strategies to support parents through digital resources. To read the article, click here.

Health Access California Fact Sheets: Our Health Care At Risk

In light of the recent election and proposed cuts to health care, Health Access California has created two fact sheets that highlight the historical importance of Medicaid, Med-Cal, and the Affordable Care Act. The fact sheets also demonstrate the impact the proposed cuts could have on people with disabilities and low-income families. To view Our Health Care At Risk, click here, and to view the fact sheet specifically on Medi-Cal, click here.

Related: Urban Institute report: “Partial Repeal Of The ACA Through Reconciliation”


RFA: State Teams Interested In Receiving Assistance In Adopting The National Standards For Systems Of Care For Children And Youth With Special Health Care Needs

AMCHP and the National Academy For State Health Policy (with support from the Lucile Packard Foundation For Children’s Health) are looking for state teams who’d like to receive peer-to-peer technical assistance as they adopt the Standards to improve their state system of care for children and youth with special health care needs. Applications are due by Jan. 23. To learn more about the RFA, click here, and to review the Standards, click here.

Genetic Alliance Seeks Feedback For Next Phase Of Strategic Plan

Genetic Alliance has created a survey to help shape the future of their organization and prioritize what’s important in the current health care landscape. To take the short survey, click here.

RelatedWhen Scientists Failed Them, Parents Unlocked Genetics Of Kids’ Disease


January 9: Partnering With Diverse Dads: Challenges And Successes

Sponsor: American Academy Of Pediatrics

More information and registration here.

January 9: Improving Care For Dual Eligibles: How States Are Innovating Through Medicare Advantage Dual Eligible Special Needs Plans

Sponsor: National Academy For State Health Policy

More information and registration here.

January 11: States And The Rising Costs Of Pharmaceuticals: A Call To Action 

Sponsor: National Academy For State Health Policy

More information and registration here.

January 11: How Can We Engage Families For System Change In Early Childhood?

Sponsor: Center For The Study Of Social Policy

More information and registration here.

Related: Ripples Of Transformation: Families Leading Change In Early Childhood Systems

January 12, 19, 26: Every Student Succeeds Act: A 3-Part Complete Series

Sponsors: Down Syndrome Affiliates In Action, National Down Syndrome Congress, and National Down Syndrome Society

More information and registration here.

January 18: Fetal Alcohol Spectrum Disorders: Screening, Assessment, And Diagnosis

Sponsor: American Academy Of Pediatrics

More information and registration here.

January 18: Improving Autism Risk Factors During The Perinatal Period

Sponsor: Autism Research Institute

More information and registration here

January 19: What You Need To Know About California Children’s Services, Genetically Handicapped Persons Program, Covered California, And Medi-Cal

Sponsor: Hemophilia Council Of California

More information and registration here

January 19: Policing People With Disabilities: The Intersection Of Race, Disability, And Policing

Sponsor: The Arc

More information and registration here


Packard Children’s News Fall 2016 Edition: Shining A Light On Teen Mental Health

Prospects For Care Coordination For Children With Medical Complexity

Marked Racial Disparities In Money Spent To Help Disabled

Improved Airline Accessibility In The Works

Testing Stem Cells In Tiniest Hearts To Fight Birth Defect

More Dolls With Disabilities Escape The Toy Hospital, Go Mainstream

Philly Discovery For Kids With Leukemia Prepares To Go Global

Engineers Customize Christmas Toys For Children With Disabilities

How One Family Cares For Their Differently-Abled Son

#The27Percent: Patients With Preexisting Conditions Rally Online

Eight Things Siblings Of Children With Special Needs Struggle With

Child, Adolescent Autism Patients Visiting EDs In Higher Numbers

Patient Navigators Can Serve Crucial Roles In Hospitals

Kids And Mental Health: CHOC Builds Country’s First Inpatient Facility For Youths Ages 3-18

FDA Warns That Repeated Anesthesia Exposure Could Hurt Young Brains

This Toddler With A Rare Disease Got A Life-Changing Treatment. Why Can’t All Kids?

Inside The Race To Build A Therapy For A Devastating Rare Disease

Spinal Muscular Atrophy Drug To Cost $750,000 Per Patient

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