Down Syndrome Conference Recordings, Cochlear Implants, & Autism Survey

This newsletter was sent July 5, 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 Medi-Cal: Contact Your Senators NOW! 

If the proposed Senate bill to repeal and replace the Affordable Care Act passes, more than 5 million California children would be at risk of losing their health coverage. This legislation would drastically restructure California’s Medi-Cal program in a way that would hit children and youth with special health care needs especially hard.

Although the Senate did not vote on the Better Care Reconciliation Act before the holiday recess, they are prepared to return to the bill upon reconvening July 10. Contacting your Senators to explain why Medi-Cal is critical (and encouraging friends in key states to do the same) is invaluable during this crunch time.

For email templates, phone scripts, social media tools, and other advocacy resources click here.

Family Voices Statement On Senate Health Care Bill

Senate Republican Statements On Health Care Bill

CBO: Senate Bill Cuts Medicaid By More Than One-Third By 2036

Roundup: Analyzing The Senate GOP Health Bill

Little-Noticed Medicaid Changes In Senate Health Plan

Disability Advocates Push Back On Health Bill As Vote Looms

For Millions, Life Without Medicaid Services Is No Option

Parents Of Sick Kids Try To Remind Congress What The Health Care Debate Should Be About


Study: Use Of Sign Language After Cochlear Implant May Slow  Verbal Development

A new study from the American Academy Of Pediatrics used nationwide data to document verbal skills in children with cochlear implants who received different amounts of early sign language exposure. Researchers found 70 percent of children not exposed to sign achieved spoken language similar to their peers with normal hearing, compared to 39 percent of those who were exposed to sign for 3+ years. To read the study, click here.

Related: two new websites for parents of children who are deaf or hard of hearing launched earlier this year. Hear To Learn offers downloadable activities that focus on language, literacy, math, and music. SignIt is a basic online American Sign Language course that’s free for parents of young children who are deaf or hard of hearing. The self-paced curriculum  is ten units and is estimated to take 25-30 hours to complete. 

Session Recordings Now Available From UCEDD Life With Down Syndrome Conference

The University Center For Excellence In Developmental Disabilities hosted their Life With Down Syndrome: Fulfillment, Health, Education, Advocacy, And Inclusion conference in May and have made all session recordings and accompanying handouts available. The 13 presentations cover topics such as genetics and research development, oral placement therapy, teaching reading and writing, dating, conservatorship, and more. To browse the presentations, click here

Brief: Increasing The Physical Accessibility Of Health Care Facilities 

A new issue brief from the Centers For Medicare And Medicaid Services discusses examples of federal and state-level efforts to increase the accessibility of health care facilities and offers suggestions for improvement. The information suggests that structural obstacles, inaccessible equipment, and restrictive polices and procedures contribute to the widespread health care disparities experienced by people with disabilities. To read the brief, click here


Surveys: Emotions Surrounding Diagnosis Of Autism Spectrum Disorder, Improvements For School-Based Services

Researchers at the University Of South Dakota are conducting surveys on behalf of the South Dakota Leadership Education In Neurodevelopmental And Related Disabilities (SD LEND) program. The first survey seeks to understand the wide range of emotions parents experience when their child is first diagnosed with autism. Five random participants will win five $20 Amazon gift cards. The second survey contains questions about school-based services for children with autism and what could be improved. 

Registration Open For Inland Valley Deaf And Hard Of Hearing Family Camp August 11-13

California Hands & Voices is hosting their second annual family camp August 11-13 at Prado Regional Park in Chino. Parents will have the opportunity to attend workshops and discuss concerns related to raising kids with hearing loss while their children participate in a variety of planned activities and campfire events. Weekend cost: $75 (adult), $55 (child). Individual day rates also available. To register, click here.


Archived Webinar: Coming Of Age In Autism: The Transition To Adulthood

July 6: Preparing For 2018: Overview Of Changes In The Marketplace

Hosted by: The Center On Budget And Policy Priorities

More information and registration here.

July 7: Changes To Special Enrollment Periods (SEPs) And Pre-Enrollment SEP Verification

Hosted by: The Center On Budget And Policy Priorities

More information and registration here.

July 11: Promoting Patient Resilience In Clinical Practice: An Introduction To the Strengthening Families Protective Factors Framework

Hosted by: Connecticut Children’s Medical Center and American Academy Of Pediatrics

More information and registration here.

July 19: Help Prevent Accessible Parking Abuse

Hosted by: United Spinal Association

More information and registration here.

July 25: How Technology Is Empowering Hydrocephalus Patients

Hosted by: Hydrocephalus Association

More information and registration here.

July 25: Focused Ultrasound And Potential New Technologies For Difficult To Control Seizures

Hosted by: Epilepsy Foundation

More information and registration here.

July 27: Expert Series On Addressing Infant Mortality

Hosted by: National Institute For Children’s Health Quality

More information and registration here.

July 27: Feeding Q&A: Beyond The Basics

Hosted by: The Johnson Center For Child Health And Development

More information and registration here.

August 16: Mental Health Parity: Assuring Equal Access To Treatment For Children And Youth In California

Hosted by: Family Voices Of California

More information and registration here.


Complex Child July Edition: Rare And Interesting Conditions

Survivors Of Childhood Diseases Struggle To Find Care As Adults

In California, 14 Million Reasons to Wonder – And Worry – About GOP Health Care Bill

Their Children Are Dying. So These Families Are Racing To Raise Money for Research No One Else Will Fund

Hoop Dreams: Wheelchair Basketball Is Changing Lives In Afghanistan

Disability Services Threatened Under Proposed Cuts To Medicaid

Stories About Disability Don’t Have To Be Sad

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