New SIDS Study, Motor Control & Cerebral Palsy, & Special Education

This newsletter was sent May 3, 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.


Family Voices Of California Parent Advocates Learn The Art Of Op-Ed Writing

On April 23, California Health Report editor Daniel Weintraub led a special seminar for Project Leadership graduates called “The Art of Opinion Writing: An Advocacy Tool.” Participants learned how to envision and write an opinion article and received tips on increasing their chances for publication. In total, 14 parents attended this productive working seminar where they outlined and drafted their opinion pieces and received individualized feedback from Daniel. As the parent voice is a strong one, Daniel will continue to guide parents in fine-tuning these articles and help them spread their opinions spread far and wide as influential advocacy pieces.

op ed

National Children’s Mental Health Awarness Week: May 1-7

Sponsored by the National Federation Of Families For Children’s Mental Health, this year’s awareness week theme is “Healthy Families, Resilient Children: Mental Health Is A Family Affair!” The campaign encourages us to increase education surrounding early prevention and identification and stresses that healthier family units are better equipped to support a resilient child. Eric Walton was 13-years-old when he was diagnosed with bipolar disorder and, looking back on his journey, offers these words of wisdom: “Mental illness should be treated with respect and kindness, not fear and stigma. People with mental illness are all human beings. And they deserve the same respect as anyone else.” To read about how talking openly against stigma with his mother helped Eric cope with his diagnoses, click here.

New SIDS Study Launches This Month: Could Inner-Ear Problems Be The Issue?

Doctor Daniel Rubens, an anesthesiologist at Seattle Children’s Hospital, partnered with the Lullaby Trust to conduct a two-year SIDS study that will begin this month. The study will investigate how possible inner-ear defects dull a baby’s automatic need to reposition itself when sleeping. They believe this can cause breathing issues, decreased oxygen, and eventual suffocation. To read more about the OASIS study, click here.


Survey: Barriers To Employment For People With Disabilities

Researchers at the Rehabilitation, Research, And Training Center On Employment Of People With Physical Disabilities want to better understand what barriers people with disabilities face in regards to employment, work support, and means of obtaining information about employment services and strategies. In order to participate in the survey, you must be between 18-65 and have a physical disability. To take the survey, click here.



May 11: School Budgets And Equity: What Do Parents And Community Groups Need To Know?

Sponsor: Children Now

This webinar will unpack the Local Control Funding Formula (LCFF), or new school finance law. The LCFF creates the promise for greater school equity by giving parents and the community a say on how to best serve vulnerable students in the budget. The LCFF will be simplified and parents will learn how to effectively partner in this important decision-making process. To register, click here.

May 12: Changing Perception: How To Build Cultural Competence And Humility

Sponsor: National Center For Medical Home Implementation

This webinar will define cultural competency and discuss the importance of recognizing diversity among patients, families, and clinicians. Participants will learn how to acknowledge and minimize unconscious biases in order to build cultural competence and quality of care among professionals and family advocates. To register, click here.


May 25: Integrating Health Into The Transition Individualized Education Plan

Sponsor: Statewide Parent Advocacy Network Of New Jersey

In this webinar, participants will learn why health is important to post-secondary eduaction, employment, and independent living as well as how to address these topics in the IEP. To register, click here.

ASK Webinar Archive

For a great list of archived webinars on a variety of subjects having to do with children and youth with special health care needs, click here (some are offered in Spanish). Sample topics include requesting a special education evaluation, building toward success in adult life, water safety and children with special needs, and traveling with a disability.


Report: Expanding Access To Care For Maternal And Child Health Populations In California

As part of the Alliance For Innovation On Maternal And Child Health program, the American Academy Of Pediatrics surveyed patients, families, and providers to better understand impediments to care and coverage. The report notes a common thread of frustration from families of children with special health care needs as they’re told the sooner they receive care, the better their children’s outcome will be. However, they’re often unable to access this care due to lack of providers or out-of-pocket cost. To read the full report, click here.

Your Legal Toolbox: Special Education Law For Children With Behavioral Issue: When Emotions Run High

Part three of The Coffee Klatch’s “Your Legal Toolbox” series is now available. In this podcast, parent and attorney Bonnie Shinagle will discuss all things emotion. Leading off with the question, “what’s the most overwhelming part of being a parent of a child within the special education system,” Bonnie will discuss how to keep your cool when dealing with adversarial members at committee meetings and transition into other topics having to do with public advocacy. To listen to the podcast, click here.

Personalized Learning: Meeting The Needs Of Students With Disabilities

After surveying 1,800 parents of children with learning disabilities, the National Center For Learning Disabilities discovered that the majority of parents weren’t familiar with personalized learning. Bringing together top experts, the NCLD created a comprehensive set of policy and practice recommendations that address best practice for families, educators, district leaders, policymakers, and everyone who has a role in ensuring that students with disabilities succeed in school. To read the recommendations, key considerations, and roadmaps for parents and educators, click here.


Study: Dynamic Motor Control Is Associated With Treatment Outcomes For Children With Cerebral Palsy

In this study, researchers found that data from an electromyography, a common procedure used to monitor muscle activity, could determine whether surgery to lengthen tendons, rotate bones, or transfer muscles to new locations would be the best route for children with cerebral palsy. They found that better dynamic motor control was associated with better outcomes, regardless of treatment. To read the study, click here.

Report: The Care Coordination Conundrum And Children And Youth With Special Health Care Needs

In a new report funded by the Lucile Packard Foundation For Children’s Health, the authors discuss why care coordination has been insufficiently financed and reimbursed, and what can be done to address the many challenges of providing and paying for care coordination for children and youth with special health care needs. To read the report, click here.

Find A Home Health Agency In Your Community

In this new section of the website, you can search for and compare home health agencies using patient survey star ratings. The data is updated quarterly. To access the website, click here.


FDA Moves To Ban The Use Of Shock Devices On Those With Special Needs

Perinatal Hospice Care Prepares Parents For The End, At Life’s Beginning

St. Louis Doctors Among 20 In U.S. Treating Hydrocephalus Without A Shunt

Cities Begin To Count The Scars Of Childhood And Try To Prevent The Damage

University Of Pittsburgh Students Demand More Visible On-Campus Representation

Foster Use Drug Prescription Under Scrutiny In Sonoma County

At UCSF Benioff Children’s Hospital Prom, Teen Feels Happy With People ‘Like Me.

A Birth That Launched The Search For A Down Syndrome Test

New RX For Kids: Get Outside And Move

Bill To Limit ADA Compliance “Abusive Lawsuits” Heads To Governor Brown

Schools Must Provide Special Education To Children, Regardless If They’re Vaccinated

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